Health, Interrupted

An Update...

2011-12-25T21:06:00.000-08:00

At the fundraiser

Trying hard to function in spite of my foul mood, I took Izzy to Whole Foods this morning. I was hungry and she needed a walk. The place, when I finally arrived, was teeming with people, and it was literally impossible for me to keep myself, and my new mechanical wheelchair out of the way. I unsuccessfully dodged people, and finally ordered my dark chocolate mocha and selected a blueberry scone; a treat for surviving the week. I checked out and brought my food and my coffee outside into the cold December air to eat with my dog. As I shared my scone, strangers walked by and commented on how well behaved she was, as if she had not eaten a cardboard box containing garbage bags just hours earlier. Once the scone was gone (save for the impressive array of crumbs all over my scarf), I returned to the store, threw the garbage out and put my mittens back on. Unfortunately, the latter was easier said than done. My fingers were so immobilized by the cold that they would not cooperate and a task that should have taken one minute took ten. It was then that all of the emotions I had successfully repressed during the week suddenly resurged. I grabbed ahold of my mitten cuff between my teeth and gave one final tug to pull it over my wrist and then discovered a significant number of woolen fuzzies in my mouth. So as I sat there trying to decide between removing my mitten to extract the fuzzies and just dealing with a mouth full of fuzzies, an embarrassing amount of tears squeezed out of my eyes and down my cheeks. I felt on the verge of a proper two-year-old temper tantrum, I CANNOT PUT MY OWN (EXPLETIVE) GLOVES ON! What the hell am I doing here? Feeling my face get hotter and hotter I left the fuzzies in my mouth and returned outside to get my dog.

Once Iz and I were on our way, I tried really hard to categorize the myriad of frustrations behind my tears. They were as follows:

My friend Lena organized a beautiful fundraiser for me on Wednesday of this past week. It was amazing. Within one week she managed to book a venue, find two bands to donate their time, convince the bar to donate 15% of their proceeds from the night to me, and invite over 100 people to the benefit. The turnout was particularly impressive, because my caregiving fund is not an official 501(c3), and as such donations are not tax deductible. The fund is a privately managed account that—thus far—has allowed me to maintain my independence, even as my physical needs are ever increasing. The benefit was flawless and Bistro Rx was filled with people who came for no other reason than to support my stubborn refusal to quit my job.
As Iz and I scooted along I realized why, despite the heart-warming amount of people who filled the bar, I still felt defeated. Because even though the place was filled with members of the staff from City College, a school I taught at over six years ago, I was pretty disappointed that only seven people from my current school were in attendance. Seven. It was actually embarrassing. Even worse: not one of those seven people was from my own department. And though an additional five people donated to me in spite of their absence, none of those people were from my department either. I felt, once again, like nothing more than a hassle to my department. It’s frustrating too, because I know that I'm good at what I do. More importantly, I know that it is valuable for my students to see my dedication to them. It’s without question that my work requires a ridiculous amount of effort – and I think they get that. But don't misunderstand me, I don't teach because I want to be some sort of great white hope in a wheelchair, I teach because I love history, I love my students, and I seem to have a gift of making the mundane slightly less boring than your average history teacher. I also firmly believe that education is the key to success in a relatively cruel world; maybe not ultimate success, but the key to the option for success. Lest I bore you as I wax philosophical about education, my confidence in my job makes me even more hurt by my department.
I thought back to our department meeting earlier that week. It started off on the wrong foot, because my department head decided to start the meeting fifteen minutes earlier than his email had stated, but no one bothered to tell me. I teach on the first floor, and the rest of the department is located on the third. You would think that I taught in a different school entirely based on the lack of communication between us. It’s almost as though they are not all able-bodied enough to walk down the two flights of stairs to keep me in the loop. In fact I thought about reminding everyone at the meeting about the fundraiser later that night, but I didn’t feel like dealing with disappointment if they weren’t interested. Besides, everyone had already been invited. So I kept my mouth shut at the meeting and seethed silently when no one showed up.
Another painful memory resurged as Iz and I trekked past the Science Center and passed what seemed like 600 runners. I guess if you have read my previous blogs you understand why passing runners is not my cup of tea to begin with, but on this particular afternoon the runners reminded me of another part of the fundraiser. One of my old City colleagues told me about her neighbor. Apparently the neighbor is in her early 30s and also has MS. She wanted to know if I would be comfortable talking to the girl. I am always a little bit skeptical about plans like this, mainly because I assume that another person with MS who sees me will be scared shitless. I have had a particularly aggressive case of this disease, and am worried that anyone diagnosed with MS will immediately visualize their life in my shoes – and they are not fun shoes to live in. I expressed this fear to my old colleague, and she assured me that her neighbor would not do that. As my colleague explained, the girl was apparently diagnosed in her teens and thus started treatment immediately. Consequently, she is still able to run and do yoga. My colleague never even knew that her neighbor had MS until a recent conversation. I tried really hard to maintain my composure at this point, and said: “Interesting, because I too was diagnosed at 19 and started treatment immediately, but clearly I am not running or doing yoga." Instead I am sitting at my own fundraiser so I can afford to pay people to help me shower in a ridiculous motorized wheelchair.
So, the memory of this conversation, sparked by the runners around me, was reverberating throughout my brain like a racquetball in a racquetball court. The whole thing made me want to punch Jesus in the face. And my doctor too. In no particular order. Seriously? You are telling me that one of these people running on the harbor on this sunny, brisk December day might have had this disease for as long as I have? It made no sense. I have tried everything. So has my doctor. I have literally tried so many medical treatments that my doctor told me that he could write a book about me. And yes, I have tried all types of crazy naturopathic things as well. I have done acupuncture, I have changed my diet, I have tried hypnosis, I have done physical therapy, I have done occupational therapy, I have done Reiki therapy. I gave up alcohol – starting when I was in college – more times than I can count. I have always been physically fit and as active as possible, but it has all been to no avail; shit just keeps getting worse. I started on Copaxone when I was 20. I was on a high dose of Imuran, got steroids every four months, then switched to Betaseron, was put on Cellcept, got monthly infusions of Immunoglobulin, had two doses of plasmaphereses, six months of Tysabri, a blast of Rituximab, tried more Betaseron, some Gylenia, and now I am trying monthly chemotherapy. All throughout there have been brief periods of stability, but a general trend of downhill progression. So yes, I am slightly bitter and not too keen on commiserating with a fellow MS patient who, after 15 years of the disease, is still running and doing yoga.
On this particular day then, I guess I was more sad than usual. But here’s the thing: when I go back to the question, “why am I doing this,” I still see my students. And don’t get me wrong – there are days when I really do want to run a few of them over with my car. But overall, they are pretty freaking amazing. Amazing enough that they make up for a department that sees me as more of an inconvenience than an asset. The day after this fundraiser, in fact, I managed to smash into my desk with my power chair and get the top of my armrest stuck beneath the top drawer. I was humiliated when I hit the desk and even more humiliated when I tried to back up quickly and realized the bottom of the desk was stuck on the armrest. As I backed up thus, the entire desk began a slow motion descent off of the platforms that were placed there to prevent this from happening. On top of the desk was my relatively new MacBook attached to the LCD projector, and every one of the three sets of copies that had been made for all of my 135 students. Too late to prevent the inevitable, as the desk crashed to the floor, rather than point and laugh – as I would have done at 14 years of age – my students got out of their seats to help me. A boy in the back of the room made it to the desk in a split second and managed to catch my laptop seconds before it hit the ground. Meanwhile, all of the other students picked up the binders and all of the pieces of paper that were now lying scattered on the floor. All I could do was sit there: horrified, face flushed, feeling like the temperature of my classroom was well over 100 degrees. I was speechless; mortified at myself and unable to articulate how grateful I was to my kids. Not one of them so much as smirked.

So I guess that is the point of this blog. Despite the fact that this disease sucks, and it took me 20 minutes to put on a pair of mittens in the grocery store, and I cannot run, and I am increasingly hurt by my department, and I spent 45 minutes of a walk with my dog with fuzzies in my mouth – I still genuinely love my job. And until that changes, I am going to continue paying caregivers and searching for a perfect roommate. So if you know of any angel type person who is looking for a roommate in the Baltimore area, and would not mind cooking, cleaning, and helping me with pretty much everything I need to do in my apartment, kindly send her in my direction. I happen to think my dog is awesome enough to make up for all of the help I need, even though she does have a particular affinity for paper products. And if that is not enough, I can also throw in a pretty sweet deal on the rent. If you don’t know of any such angel, then consider making a donation – I am currently paying more for help than I make in a salary. And I am not yet ready to leave all of this behind. Not yet.

(This blog was written thanks only to my friend, Meli. In addition to listening to this rant first-hand, she also typed this entire story based on audio-recordings that I emailed her in paragraph installments. For me, dictation software is more of a catalyst to a meltdown than an instrument for my catharsis. Thank you.)

Attitude Adjustment

2011-07-06T08:36:00.000-07:00

I need one.

It might involve a (temporary?) hiatus from facebook.

There is this ugly emotion that is about to suffocate me. There is a kind reader out there who told me that my spirit was too big to be contained by a wheelchair (that was one of the nicest comments I've ever received, by the way), but I'm getting worried that this ugly emotion is threatening to strangle even my spirit these days. The emotion is jealousy.

There seem to be two themes on Facebook these days: vacation and babies. And in an extreme form of masochism, I cannot stop looking at pictures. The thing that bothers me is that I truly, deeply and honestly am so happy for every one of my friends, but rather than ask questions, I want to lie in my bed, pull the sheets over my head and cry. My friend Molly who graduated from Colgate when I did, just had a baby girl and I swear to God she is the most beautiful girl I've ever seen. My roommate Meg just returned from a 10 day excursion to Alaska, and honestly, in this Baltimore heat and humidity I cannot think of a place I would rather visit. Another girl that I ran track with in high school is gallivanting all over the countryside of Australia. All of this is wonderful of course, but I wonder: do these people truly appreciate what they have? Do any of us truly appreciate what we have before it is gone?

It makes my heart hurt.

So I guess, the whole point of this blog is just to implore you, if you are able to hike, or to climb mountains, or to snorkel with beautiful fish or to make beautiful, perfect children please know how happy I am for you. And please know that I wish I were strong enough to comment on your pictures, or in some cases to even pick up the phone and congratulate you. But I am not. I am too busy sitting in my apartment wishing I were not imprisoned by my own body. Hating myself for being a bad friend. And wishing I had the emotional fortitude to eradicate this heinous emotion that is choking me from the inside out: jealousy.

Shattered

2011-06-27T21:49:00.000-07:00

When I was a kid, my dad used to tell me Bobo and Floppy stories. Bobo was a stuffed teddy bear and Floppy was his more practical, stuffed canine sidekick. I always looked forward to a short goodnight story that included Bobo’s shenanigans and Floppy’s solutions. There must have been a time when both Bobo and Floppy were new, properly stuffed, fuzzy and soft animals, but in my memory they looked much like one of Izzy’s chew toys (except I never ate the stuffing out of my stuffed animals. Though I did, supposedly, chew off Bobo’s nose).

Fast-forward two and a half decades. I spent Monday, Tuesday and Wednesday of this past week at my home-away-from-home, Johns Hopkins Hospital. It was a planned admission and, as such, was only slightly more organized than a late-night trip to the ER. Though I was scheduled for admission at noon there were no rooms available, so I spent five hours in the Clinical Holding Unit before I was finally assigned to Meyer 927A. In Meyer, I paid $10 for access to the room’s 20-year-old TV and settled in for a night of mindless Monday night television. Right as my favorite show started, “transport” showed up to take me for a late-evening, surprise MRI. Not a big deal, I figured I’d actually save a few brain cells by missing the Bachelorette, but I secretly wished I hadn’t wasted my $10 on an evening that would now consist of the inside of a tomb-like tube that sounded like the construction site outside of my apartment.

As soon as they slipped the plastic “cage” over my head to ensure my head remained immobilized, they slid me into the tube where I was initially relieved to find that a mirror above my eyes reflected an image of the other room. And though I was initially comforted to see it, it soon unhinged me in a way I never predicted: above my feet, perched at the foot of the MRI table, was a stuffed teddy bear that looked exactly like Bobo. Agitated as I typically feel before an MRI, I attempted to calm myself down, and pass the time by creating a new Bobo and Floppy story. This was a good idea for about 4.3 seconds. The story involved Bobo inheriting a superpower that enabled him to leave behind all circumstances that made him uncomfortable or scared, and as I was telling myself the story I realized I was telling the story to a small child. Not to just any small child, but to my own small child. All of a sudden, I felt the walls of the MRI close in on me.

As this disease has progressed, I’ve lost things slowly, over the course of almost fourteen years. All of these things have been physical though, and while the disappointment has seemed occasionally oppressive, and has required significant modifications to my lifestyle, it is physical. As limitations accumulate, so do my needs: a person helps me get changed, my wheelchair helps me navigate my apartment, my giant mini-van helps me get to and from school, etc. But the common denominator, as the numerator in the fraction slips closer to one, is who I am – not what I do (or don’t do as the case may be), who I am.

As someone who spends a lot of time in her own head, I know what that means – probably better than I should. I know that at my core I am hopeful. I am hopeful that disease or not, I will share my life with a family. A family that includes children. And since I have no conscious aversion to adoption, when I agreed to try chemotherapy I didn’t give my fertility a second thought. Which is why, when I found myself shallowly gasping for air and swallowing my own tears in the MRI tube as a result of a Bobo and Floppy story, I was – amidst other emotions – confused.

And that was just the beginning. For two straight days I listened to and signed informed consents that consented to – among other things – the possible side effect of sterility. I cried after every signature, but it wasn’t until I was halfway through the chemo that night that I figured out why. This wasn’t physical loss. As such, there was no amount of help that I could enlist to deal with it. This was a loss that reached deeper than I can articulate. Loss is usually characterized by something being taken away, but this loss included addition: it was the addition of a gaping black hole to my already hurting heart. Because suddenly this disease had me in its grasp. It had my hope.

I am sure that I am not the only person in the world who, at one point, is confronted with the realization that there is a major disconnect between the life you want versus the one you have. But last week, in the cold confines of an MRI tube, I sure felt like I was. And Bobo, as unassuming as ever, was impotent to help.

Perspective (?)

2011-04-16T18:32:00.000-07:00

I'm wondering a few things about perspective these days. I understand what it means and I see its value, but to put one's perspective into action? That's a whole different story.

There are people that have it a whole lot worse than I do. I see some of these people at Kennedy Krieger twice a week, and it's gut wrenching; small children with developmental and physical disabilities, a sixteen year old girl who was shot and is now a paraplegic living in a totally inaccessible house in West Baltimore, a great number of my students who have survived a level of loss that I cannot even comprehend, etc. But to be honest, knowledge of all this makes me feel, a) guilty for not fully appreciating what I have (which I acknowledge is a lot), and b) pity, because I assume if I have as much as I do and I'm still this sad, someone else with less support or worse health must be even more sad. Still, though, when it's a beautiful spring day and I'm out and about on my ridiculous scooter, with my even more ridiculous dog, I feel like every single person who runs by me is karate chopping me in the heart. In those instances I have never once stopped and said to myself, self, you could be much worse off: you could have gangrene and be homeless and have the hantavirus. I just remember running, and I remember loving it.

Probably thirteen years ago, I distinctly remember sitting in my dorm room at Colgate, listening to my caustically angelic roommate, Megs, complain about her one pimple that you'd need a microscope to see. I was a few days out of a five-day course of IV steroids, and looked like a before picture for proactive acne solutions. Without thinking, I spoke more sharply than I intended to, "Megs, have you seen my face right now? Jesus." My friend Meli interceded on her behalf, "Kate, imagine for one second that your entire family died. Awful, right? Now imagine, a few years later, Megs' mom dies. Would you tell her to stop crying because your entire family was dead? No, you wouldn't, because it's still a tragedy." Defensively I snapped, "We're talking about zits, Meli, not dead family members." Of course, though, I got what she meant: you can't prorate misery. Point noted.

I've tried to apply that rationale to my life from that point forth. I'm not going to lie, though, when people talk about "hating" their bodies' perceived imperfections, I have to fight the urge to say, stop bitching, you're healthy. But I don't. Because if a friend is upset, a friend is upset, and as a friend -- and I hope to be a good friend -- it is not my job to judge nor to undermine someone's sadness or frustration.

I've come to the conclusion, thus, that perspective in action isn't really feasible; at least not for me. Maybe it's not wholly feasible for any of us, because life isn't easy, and when you're in the throes of it -- whatever it is -- it's almost impossible to not want something you can't have. Unless you're Buddha. (Which I'm not.)

So when it's spring and all I want to do is take a run, I guess it's okay that I still cry.

The bad, the good, and the ridiculous

2011-04-11T19:20:00.000-07:00

The Bad. To get it out of the way...

I had an MRI a few weeks ago. The results could have gone one of two ways: no new activity, or new disease activity. I was hoping for the latter. If the recent worsening were attributed to the preexistent lesions, that would merely indicate that previous lesions were leading to atrophied neural circuits (am sure that last sentence is scientifically wrong, but it sounds better than how I usually characterize progression: "old shit is shriveling up and dying.")
So I laid in the MRI tube for almost two hours while I should have been at school and tried to will an active lesion to appear in my brain.
It worked: I have a brand new active lesion in my left frontal cortex. In the short-term I was psyched: active lesions can be treated, whereas when old shit dies it is dead. End of story. I started five days of IV steroids the following evening and took the next week off from school to rest and recuperate.
Other than the emergence of about 700 new zits and a complete inability to sleep, though, the treatment that I'd mythically touted as potentially helpful didn't do a damn thing. Like nothing. Wait, I'm lying; it suppressed my immune system catalyzing a serious UTI. My arms are still weak, my fingers are clenched when I wake up, and my body yearns to exist in a constant state of rigor mortis. I cannot will my hands to properly hold a tissue up to my nose, and cannot -- for the life of me -- get enough strength behind my lungs to either cough OR to blow my nose. Am trying not to think about any of this, but as I cannot find a way to get away from my own body, distractions are few and far between.
In the meantime, I have never, ever felt so alone in my entire life. I love this city, and my job (obviously). I love my doctor and the proximity of my current apartment to both Johns Hopkins and the amazing physical therapists at Kennedy Krieger. I also love the grittiness of this city; there are no pretenses in Baltimore -- it is what it is. You can go to a fancy restaurant wearing sneakers, you can fall out of a scooter while "walking" your dog and two homeless men will pick you up without asking for money.
But. (Here it is...) I have no emotional support system here. There are days that go by where I have to remind myself to keep breathing, and the only people who seem to notice how sad I am are 14 and 15 years-old. I just got back from a short trip to Seattle, and it dawned on me that I have to fly 2,300 miles to let go of the guilty feeling I get every time I ask someone for help. I can almost feel people wince when I say their names; I imagine them thinking to themselves: Lord, what now? How many Kate-astrophies can she have in a day? I don't feel like that in Seattle (probably because I'm not there often enough to feel as burdensome as I do in Baltimore). I also don't feel like that in my classroom (which is only part of the reason I'm fighting tooth and nail to keep my job).

The good. To remind me that I shouldn't drink Liquid Plumber...

The girl I hired to help me get my pants on in the morning is a Rock Star. She does far more than help me with my pants, obviously. I recently introduced her to a therapist at Kennedy Krieger as my personal savior. Some people have Jesus, and I -- at least while my faith is on (what I hope will be) a temporary hiatus -- have Kristen. Kristen is 27 years-old, 5'8" and maybe 120 pounds soaking wet; I was consequently skeptical of her ability to deal with my surprisingly combative rigor-mortis-esque, more-than-120 pound body. But she has consistently proven me wrong. She transfers me with the ease of a caregiver whose name should be Helga, and helps me with things I didn't even know I needed help with. Quick example before she reads this and immediately demands a raise: when Kristen first started working with me there was a two foot long gaping hole in the drywall in my bathroom. The hole was at knee height directly below the handy grab bar that I use to pull myself up while putting on my pants. For some reason, the only way I can get myself to stand is if I flail my knees into the wall, and push up while my knees are stabilized. The result: bruised knees and a cavernous hole in my bathroom wall. Kristen was appalled. Within a week, she requested I have my landlord patch the wall, and bought a yoga mat in order to fashion a pad for my knees beneath the grab bar. The result: bruise-free knees and a hole-free wall.
Antonisha and Shaun-de'. They are students so it is questionably appropriate to say this, but I love them. In addition to being just generally awesome students, they are exquisite people. They both stay after school with me to make sure I have help into my car at the end of the day. That they sacrifice their afternoons to help me is awesome in and of itself, but in two instances their selflessness had made my heart break open with gratitude that I can barely articulate. Last week third quarter grades were due and I had 9 million things to do. After stupidly agreeing to let a few lazy AP Psych students make up tests that day, I spent all day changing grades, inputting grades, and selecting from one of 12 generic comments in the computerized grading system. Point being, by the time all of my grades were in and I had planned and prepared for the following day, it was ten of seven. Antonisha was still there. I asked her repeatedly to tell me when she had to go, and she continued to assure me she didn't mind waiting. Maybe sitting around school waiting for a teacher doesn't seem like a big deal to you, but as someone who can still vividly remember high school, I can guarantee you there is no amount of money in the world that would have kept me in school with a teacher until seven p.m.
Then there's Shaun-de'. Shaun-de' is on the lacrosse team and had a home game last week. Since Antonisha was absent, Shaun-de' told me to text her when I had to go and she'd leave the game to help me get to my car. Shocked, I said, "Girl, you can't leave a game! I'll find another student, there are 1,400 kids in this school." Shaun-de' replied matter of factly, "Yes I can, Ms. Hooks, I'm Shaun-de'." So I relented and told her I had to leave at 4:15 and that if she was on the bench at that time and could run up to my room, I'd love her help, but that it was not a big deal. 4:15 came, and Shaun-de' didn't, so when Mr. Marinelli offered me help I took it. Ten minutes later, I got a harried voicemail from Shaun-de', apologizing for being five minutes late and promising me she hadn't forgotten me. Once again, I don't think I stopped thinking about myself for long enough in high school to even offer to help an adult get to her car at a certain time, much less leave an athletic competition to follow through with something I said I'd do. Gives the saying, "Kids these days..." a whole new meaning.

And finally, the ridiculous...

Izzy. She is the single most ridiculous dog alive. Last weekend I needed to go to the mall to get my eyebrows waxed. In an effort to kill two birds with one stone, I brought Izzy with me. I didn't even bother putting her therapy dog-in-training vest on since at this point everyone in The Gallery downtown knows her. So I was two seconds away from steering my scooter into the handicapped accessible door I had just opened, when Izzy took off at full tilt in the opposite direction. The leash ripped out of my left hand and I immediately pictured the worst. Most dog owners might envision "the worst" as their dog running into traffic. Not I. I envisioned a small yorkie-poo swallowed whole by my "therapy dog" turned savage beast. I whipped my head around to discover that "the worst" was even worse than I'd imagined: Izzy was after a person. In her defense, he was a large man wearing a winter hat, carrying several bags and running towards me. He was also screaming like a child because he was being viciously pursued by a barking, growling beast. I vaguely remember yelling at him to stop screaming as he sprinted by me into the mall, but before I even got my words together, Izzy -- in hot pursuit -- followed him into the mall. It was only then, as she was immediately surrounded by security guards, that she seemed to realize I was no longer with her. Looking contrite and sweet as ever, she stood in the foyer of the mall, with her leash dangling pathetically on the floor, surrounded by mall security guards, peering through the glass doors at me. Mortified, I futilely willed the concrete sidewalk to open up and swallow me whole, but instead listened as the security guards regaled me for not "muzzling" my dog. It was at that point that I snapped out of speechless humiliation and felt immediately defensive on behalf of Izzy. To be honest, much (most) of her behavior is utterly indefensible, but this? This was almost admirable: she was clearly defending me from what she perceived to be a threatening man. Without thinking I yelled back; something about how she is a "protective" therapy dog, etc. etc. The guards seemed convinced and walked Izzy out of the mall where they handed me the leash and suggested I take her for a walk to "calm her down."
I decided to get my eyebrows waxed the following day...

Horror of Horrors!

2010-11-20T19:56:00.000-08:00

It happened. My personal nightmare.

Some rational adults fear irrational things: bugs, mice, dirt, farting publicly, having spinach stuck in their teeth, contracting rare and incurable diseases, etc. Not I. I was the resident exterminator when I lived in Fells Point; I disposed of dead mice caught on sticky traps, captured giant roaches under pint glasses and threw them out the window of my room, and even talked my old roommate off of the proverbial edge after she discovered a literal mouse house in her purse. (I know what you’re thinking, but we were clean. I promise.) My sole fear is this: falling out of my wheelchair in front of students.

(I have other fears obviously, but that is one that haunts me on a daily basis.)

One might think that falling out of a wheelchair is a nearly impossible feat but I, my friends, have turned it into a somewhat regular part of my repertoire. Let me see…

There was the time that, after one too many cocktails, I let my best friend Meli push me down Rainier Ave. in South Seattle at top speed at two o’clock in the morning. She would sprint until we were moving faster than manual wheelchairs are supposed to move, and then suspend her entire body horizontally in the air by pushing up on my handles while I leaned forward and steered. It was amazing. Amazing until the front wheels of my chair hit a crack in the sidewalk and got stuck. The chair then pitched forward, catapulting Meli over my head into the side of a concrete building and ejecting me onto the sidewalk face first. (We were both inexplicably okay.)

There was also the time that I was on a first date, and the two of us decided to walk from my apartment to Iggie’s Pizza. He was pushing and I was focused more on being cute than on the road in front of us. We reached a particularly unforgiving curb cut, my foot plate jammed into the concrete and I, before even realizing how un-cute it would be, sailed through the air and landed gracelessly on my freshly shaven knees. (He, to his credit, was undeterred.)

It was only recently, however, that I started falling without the assistance of a weathered sidewalk. I attribute this to the post-surgical deterioration of my core, and to my simultaneous stubborn refusal to ask for help. The evening after the first day of school I was getting ready for bed and taking my evening vitamins when I dropped one on the floor. Izzy was eyeing it from my bed, so rather than call Meg for assistance with yet-another inane task, I leaned forward to pick it up. About halfway down, my sock-covered feet slipped behind the footplate, my chair rolled backwards, and I fell on my face. Actually, I fell on my left eyebrow. And rather than land on an object-free piece of carpeted floor, my face landed directly on my surge protector. And though I am used to falling, I am not used to hurting myself. I thus let out a cacophony of expletives, sending my dog flying off of my bed to go get Meg. I turned to remove my head from the surge protector and saw a not insignificant puddle of blood on the carpet next to my face. Much like a toddler who doesn’t cry when she initially falls, but has a meltdown once she sees her knee is bleeding, I—upon seeing the blood—immediately lost it. Bruised knees are one thing, but a busted face on the second day of school is entirely another. At this point, Meg and Izzy were by my side, and Meg (who is not currently a nurse but most definitely should be) went into triage mode. She brought me a wet washcloth, and determined that I might need stitches. After I vehemently refused that option, she finished cleaning my face, threw me into my bed (with another washcloth) and took my car to a 24-hour CVS for butterfly bandages. Forty-five minutes later, bandages in place, I fell soundly asleep while Meg cleaned blood off of my carpet.

Incidentally, though my left temple was bruised the next morning, the bloody incision had scabbed over beautifully and was predominantly masked by my eyebrow. And though every adult in the building inquired as to the origin of my war wound, not one student so much as looked at me funny (most likely because it was only the second day of school). Still though, I was relieved. Explaining that I’d fallen on my face while reaching for a vitamin is a story my self-esteem is not prepared to handle.

Perhaps now you understand my fear of falling out of my wheelchair in front of my students is neither implausible nor irrational.

Friday my morning helper wasn’t in school; I was left to unpack my backpack, grab my laptop, attach the power cord and set up the LCD projector alone. As these are all things I felt relatively capable of doing independently, I didn’t ask anyone for help. Two minutes later, I wished I had. My backpack was on the floor, and as I leaned forward to reach the power cord, my feet slipped behind the footplate, the chair rolled backwards, and within an instant, I was on my face. In front of twenty-eight ninth graders. In addition to the two four-letter words that slipped out of my mouth on my way to the ground, within seconds I also contemplated feigning my own death so as to avoid the fall-out of my public descent.

I opened my eyes.

Every student in the class was huddled around me asking if I was okay. Two boys asked what they could do. I asked Larry to set the brakes and moments later he and Sekou picked me up effortlessly and put me back in my chair. My kids went back to their seats and I waved air towards my face attempting to return it to its original – less fuchsia – hue. It was then that I realized the most remarkable thing about my fall: no one had laughed. Not one goofy ninth grader.

And even more astounding, they didn’t tell my other classes. By 3:05 not one student had so much as implied that he’d heard about it.

(If you don’t find that amazing, you do not know fourteen and fifteen year-olds very well.)

So it happened. My number one fear. And I’m still here to tell about it.

Benefit Happy Hour this Friday!

2010-10-31T16:29:00.000-07:00

Everyone is invited :)

http://www.facebook.com/?sk=messages#!/event.php?eid=113364875394819

Thank you is an understatement too...

2010-10-31T15:44:00.000-07:00

Monday was a hard, hard day. I had my first physical therapy appointment since my surgery, and spent two hours completing a humbling reevaluation. Without burdening you with two-hour’s worth of PT-related whining, the entirety of the appointment can be summed up as follows:

Therapist: Okay Kate, now try to kick your heel back towards your butt.

Me: (lying on my side on the elevated mat, teeth gritted, brow furrowed) Is it moving?

Therapist: No. But it says here you were able to do it last time.

Defeated is an understatement.

Two days later, I pulled into my parking spot at school to find Destiny about to head inside. As I opened the side door of my van, she stuck her head in and with the most ridiculous-sounding voice I’ve ever heard, said “Hi Ms. Hooks, I lost my voice.”

Though I’d be lying if I said I remembered what Minnie Mouse’s voice sounded like, I’m pretty sure that Destiny’s voice was slightly squeakier and considerably higher pitched.

“What’s up Kiddo? You sound ridiculous¸ but I’m so glad you’re here!”

I backed up the driver’s seat and lined it up with my chair, took a deep breath and transferred horizontally into the chair. Or should say I attempted to transfer into my chair. As soon as I initiated my muscles, they decided to put my body into its new favorite “plank” position. My butt was half-way on the chair, my legs extended straight into the passenger seat and my back pushed against the back of the chair so hard that the chair actually tipped over backwards and I was stuck at a 45 degree angle unable to move.

Destiny asked the obvious, “Ummm, what do we do now?”

That’s when Antonio walked by and peered in.

“Antonio, come help!”

Between the two of them, Destiny managed to get my legs out from under the passenger seat, and Antonio – using all of his might – pushed me forward enough that my trunk finally bent. By that point, Michael was standing outside of my car asking how he could help too. Both of my shoes had fallen off, but once I was securely in the chair, shoes were no longer a high priority. Antonio pushed me out of the van, handed me off to Michael and the four of us trekked into school through the rain. Once in the building, the new administrator asked how I was,

“Better now, it just took three kids to get me in here!”

She laughed. I think she thought I was kidding.

Once inside, though, I attempted to leave my mortification and frustration in the van and spent the next eight hours trying to make the unification of feudal Japan interesting to 9^th graders. At the end of seventh period, I rolled down the hall towards the bathroom, and caught up to a student I taught three years ago. Right before he made a right hand turn into his English class, I thwacked him in the back of the knee,

“What’s going on, Miles Green?”

Pants hanging down beneath his butt, with twisties in his hair and gold fronts on his teeth, he turned around and caught me off guard,

“Ms. Hooks. Hey I wanted to tell you, you ain’t gotta worry about that money stuff no more, we got you.”

I literally had no clue what he was talking about. Apparently my face registered confusion.

“Ms. Belleville told us what’s going on. You ain’t gotta worry, Ms. Hooks, seriously. We got you.”

“Well Miles, I appreciate that, but I hate needing all this help from people.”

“Nah, nah, Ms. Hooks, that’s just it, you gotta learn to swallow your pride and take our help. That’s what you gotta get, we want to help you.”

“Okay, Miles. I get it.”

“Seriously, lose your pride. We got you.”

He disappeared into English class, and I continued towards the bathroom. The kid gave me chills.

Afterwards, I went back to my room to pack up my stuff and finish up some work. Mr. Marinelli, the Science Department Head walked in to my room, sat down next to me and proceeded to explain a Causes page he set up on facebook called “Running for Kate’s Care”. Apparently he started running recently, has signed up for a number of races, and is asking for pledges in honor of my care giving expenses. Two parts of this conversation struck me as absurd: 1. He prefaced the story with, “I did something last night and really hope you won’t be mad.” 2. Marinelli doesn’t run. At least that I knew of. The last time we talked about aerobic exercise he told me he walked and that he didn’t enjoy running. So I was shocked. On a number of levels. And I am so rife with guilt and self-doubt and perpetual frustration that I struggled to respond.

“Thank you.”

He doesn’t need to hear about the panic attacks that wake me up at 4 am almost every night where I start to imagine my life without Meg and the millions of impossibilities that I cannot conceive of conquering without her – care giver or not.

Marinelli left, and almost immediately the bell rang signaling the end of the school day. Within seconds, Jasmine (see my “Little Homie” story below) walked into my room and reminded me that we had to leave immediately so she could get a ride with her friend’s mom. As Jasmine is, at this point, the only person at school who is able (and willing) to physically lift me out of my wheelchair and heave me into my driver’s seat, I am tied to her schedule. After she heaved me into my seat, she backsdown the ramp and says this,

“Last period, Ms. Hooks, I was thinking about how much I love you and I decided that if the school were on fire, and no one had gotten you out, I’d go back into the burning building to find you.”

“Really, Jas, but what if I were in the bathroom? I know how much you hate bathrooms...”

“Ms. Hooks, of course I’d rescue you from the bathroom. I already did that once, remember?”

So I can’t kick my butt with my heel any more. With either heel in fact. But really, with these people in my life, how lucky am I?

Sitting, Waiting, Wishing...

2010-10-09T21:38:00.000-07:00

Title compliments of Jack Johnson. And though his song has nothing to do with my particular circumstance, I cannot help but get those lyrics in my head on a more-than-daily basis. I’m still sitting, obviously. But as the days go on, I’m losing patience rapidly. You know that ants-in-the pants feeling you get after a long flight or car ride when you just want to move your legs? I have that feeling all day long. Every day.

Waiting. I am desperately trying to hold onto a semblance of hope that this will get better, but in the near-term, the list of things I wait for is ridiculous. It starts at 6:00 a.m. when my obnoxious alarm wakes me up with a jolt. Some people hit snooze a few times and fall back to sleep for an additional ten minutes, and honestly there are days when I try. But the alarm sends me into a near panic-attack every morning, because the next hour and a half is debatably the most stressful part of my entire day (which says a lot considering I’m a teacher). I start waiting for Meg. Once the NPR announcer says it's 6:15, my stress level elevates and I start to worry about the list of things I need cooperative legs to do in order to get to school on time. Usually Meg saunters in around that time to help me get out of bed, but we don’t speak – there is an unwritten code of silence between the two of us until she’s had her coffee. When I finally arrive at school, I also wait (although generally my new helper, Rebecca, beats me to school). She helps me transfer from the driver’s seat to my chair, and pushes me into the building towards the main office. I sign in, she gets my mail out of my mailbox, and we head towards my room. Though at this point it has been less than two hours since my alarm went off, my level of exhaustion and stress convince me it’s late afternoon.

Once the bell rings, though, there is no more waiting. The time between 8:15 and 3:05 flies by and there is never enough time within a 47 minute class period to accomplish everything I intend to accomplish. Every day I want to be a better teacher than I was the day prior; at this point my job is my top priority and, as such, my students truly get the best part of who I am. They get my drive, my patience, my enthusiasm and my confidence, and at the end of the day this passion is almost immediately replaced by fear, self-doubt and frustration. They also get every iota of energy I have, and possibly even some that I don’t. That means that at the end of the day – in addition to my aforementioned grumpiness – I am also physically drained. Thus, the foray into patience-cultivation resumes.

I wait for Destiny (another new helper) to straighten my desks, and for Jasmine (referenced in my “Little Homie” story below.) and Antonisha to eventually bring me back out to my car. There, Jasmine actually picks my entire 5’10” frame up off of my wheelchair and heaves me into the driver’s seat as if I’m a toddler. Then I often head towards Hopkins to pick Meg up from work (where I generally wait in the hospital parking lot), or I head directly home. If I’m alone when I get home. I need to wait for someone to spot me during the seat-to-wheelchair transfer (my attempts to do this alone after school have ended in disaster – or near disaster – far too often). As the list of things I cannot do independently grows, the list of things I need to wait for grows conversely – putting pants on, getting on or off the toilet, going anywhere in my car, getting into or out of the shower, changing into pajamas ETC. Since I have zero control over the execution of these tasks, I also have zero control over when any of these things happen.

Which brings me to the last word in Jack Johnson’s aptly titled song, Wishing. But something tells me that one doesn’t require much explanation.

Cankles

2010-09-27T19:09:00.000-07:00

I knew that as soon as school started my writing would fall -- once again -- by the wayside, but I've been having this recurring thought/memory of late, and I desperately need to write. Please forgive my brevity…

My senior year of high school I was lying on my back on my best friend's bed. Her bed was adjacent to the wall, and the window was set about half way between the foot and the head of her ridiculously concaved twin-sized bed. As the two of us talked about something not-particularly-memorable, I lifted my right leg up at a 90 degree angle and rested it between the wall and the window frame. While we chatted, I stared at my leg. At an age when most girls are prone to irrational bouts of self-deprecation in regards to their bodies, I was the rare seventeen year-old who felt almost reverential towards mine. My knobby knees and ugly feet weren’t pretty necessarily, but I felt this almost stifling amount of gratitude for what they did for me. My feet were connected to what – at that point – I defined as The Story of My Life. And as I mindlessly stared at my right leg, I intermittently flexed and relaxed my quad muscles, impressed and grateful for my ability to control just one part of my life.

I think about that day almost every afternoon. When I get home from work and change from a pair of pants into a pair of shorts, I cannot help but look at them. It’s foolish. I experience the same type of internal monologue when I wake up in the middle of the night to pee. It goes like this:

I wonder what time it is?
Don’t look at the clock.
If it’s within an hour of your alarm you will not fall back to sleep.
But what if my alarm isn’t set?

What if I unconsciously turned the alarm off in the middle of the night?

Do not look at the clock. Don’t do it, don’t do it, don’t do it.

I always look.

The same thing happens with my legs, but the internal monologue sounds a little different:

Kate, don’t look at them. Don’t do it. It’ll put you in a bad mood. Seriously. Do. Not. Look.

But what if my ankles are less swollen than usual?

What if I contracted deep vein thrombosis during the day and I could prevent an untimely death by just looking at them?
Wait, can you even see deep vein thrombosis?

Once again, I always look.

But instead of having an anxiety attack on account of another sleepless night, I experience a combination of disgust and sadness that knocks the wind out of me. Now my bony feet are swollen, and my ankles merge into my calves, and though my knees are still knobby and my thighs are still skinny, but there is no longer any functional relationship between my mind and my muscles. The only time I even see my quad muscles flex is when my nerves misfire and my leg kicks out in a decidedly nonfunctional spasm.

A Plea for Help

2010-07-23T13:10:00.000-07:00

I wish to start this blog in the same way my middle school students liked to start their essays: in this blog I am going to tell you why there is a donation button on my blog. And that, my friends, is why I no longer teach middle school.

Please note also, that before I begin I will try as hard as I can to avoid either ranting or indulging in self-pity, but both efforts may very well prove futile.

My current situation:

• I had pretty major surgery on June 17th. And though the entire point of the surgery was to make my life with M.S. more manageable, at this point the opposite has proven true. Make no mistake, things weren’t going swimmingly prior to the surgery, but – when necessary – I could do things like get in bed, transfer into and out of the shower, and put my socks on independently. Now, those things are only possible with the help of my roommate, Meg.

• Problem: Meg is moving to NYC. She wants to move as soon as possible, but has resigned herself to remaining in Baltimore through December at the latest.

• In addition to being one of my favorite people in life, Meg is also my built-in caretaker. I trust her implicitly. Even when I find myself in impossible predicaments, she is able to rescue me. She never, ever lets me fall, and she problem-solves like no one I’ve ever met. She loves to cook, bake and clean, and she can always, always make me laugh. Meg’s only “flaw” is that she refuses to take a compliment, and seems to think I’m joking when I refer to her as superhuman. I, of course, am dead serious.

• When Meg leaves, and when she visits her boyfriend in New York on the weekends, I am left with a few options: 1. Enlist the help of friends, 2. Move home imminently and give up on my so-called independence, or 3. Hire a caretaker. Each of these options is rife with cons; option # 1 is unrealistic, option # 2 is antithetical to my general Will to Live, and option # 3 is ridiculously expensive. One might wonder why health insurance does not help with the cost of a caretaker, and to this I have no definitive answer. My cynical self, however, posits that if one is forced to go on disability, one is no longer the concern of his or her private insurance company, and things like personal care attendants are thus covered by the state. This saves the insurance company money, and that – obviously – is the name of the game.

• The caretaking options that I have proactively researched cost $20/hour. Sounds reasonable until you do the math. If I hired someone for a minimum of 5 hours on the weekends, it would cost a minimum of $100, an excess of $400 each month. As a teacher, this is not an added expense that my salary can incur.

I am consequently relegated to ask for help. I love my job. Teaching offers me a daily reprieve from thinking/stressing/obsessing about M.S., and though I am fully aware that what I do is not who I am, my job – at least at this point – feels like the best part of who I am. It’s the part that makes me want to get out of bed in the morning, and the part that makes me feel like I still contribute something to this life of mine – even if Meg has to help me get my pants on in the morning. I cannot let this be taken away from me, but it’s going to take a caretaker-extraordinaire to prevent; and that is something, at this current juncture, that I just cannot afford.

My Stoop Story

2010-07-18T14:28:00.000-07:00

http://www.stoopstorytelling.com/shows/42/storytellers/386

My Little Homie

2010-05-16T10:51:00.000-07:00

As a teacher in a wheelchair, I am chronically reminded that kids -- even kids that talk out of turn and never do their homework -- possess a level of core goodness that (unfortunately) seems to erode a bit after the age of 18. I am reminded of this almost every morning when I park outside of my school and am immediately bombarded with students asking if I need help, while the adults hurry into the building to sign in and get their copies made before 8:00. Sometimes I am also reminded of this when I use the bathroom.

Those of you with proper "adult" jobs might have access to office bathrooms that are clean and well-stocked with toilet paper and hand soap. If you're really lucky (though chances are, you haven't even noticed this), your properly stocked bathroom might even be ADA compliant (a.k.a. wheelchair friendly). As a teacher, I am not afforded such luxuries.

A few weeks ago, Jasmine, one of my old students spent her sixth period lunch in my classroom with me. She calls me her "Big Homie" and I call her my "Little Homie"; ironic considering she is roughly twice my size. She had work to do and I was hastily recording grades from the day's quiz into my gradebook. She'd intermittently reminisce about ridiculous things I did during class three years ago (she thrives on poking fun of me), and her occasional imitations of my voice are hilariously funny (though only because I hope they're totally -- I pray -- inaccurate). When the 10 minute warning bell rang, I figured I should head to the bathroom while I still had ample (or what I thought to be ample) time.

As I left the room, I told Jasmine to come check on me if I wasn't back when the bell rang. The words were intended as a joke. I mean really, what could a student do if I fell in the bathroom? (Even if that student threw the shot and the discus for the track team.)

So I headed into the bathroom and managed to -- for the sixth time this school year -- get stuck on the toilet. No matter how hard I tried to heave myself off the toilet with my left hand on the grab bar and my right arm braced on the toilet paper holder, I could not get myself to stand. And try as I did, I could not manage to keep myself calm; I started crying (which further ensured my complete inability to get up). Then I made another crucial error -- I looked at my watch. 1:24. In one minute, the bell would ring, my 7th period would invade a teacher-less classroom and inevitable chaos would ensue. This made me cry even harder and though I tried one more time to get up, I was met with zero success. The bell rang and my completely counterproductive meltdown elevated a notch.

Then I heard the bathroom door open.

"Ms. Hooks, you okay?"

It was Jasmine. I was crying so hard at that point I could barely speak.

"No. I'm stuck. Go find Mr. Marinelli and ask him to watch my class."

She said she would and promised she'd be right back.

The late bell rang sounding the official beginning of 7th period and I attempted to get it together. Jasmine once again opened the door.

"I couldn't find Mr. Marinelli, but I asked the skinny kid with the heart condition in your class to keep an eye on things and he said he would. What do you need?"

[The skinny kid with a heart condition could never, incidentally, be trusted to keep an eye on things.]

"Can you come in here and help me get up?"

"Okay, but public bathrooms scare me."

She walked in. I pulled my skirt down as completely as possible so as to appear somewhat presentable and opened the stall door. Jasmine peered in and immediately broke into hysterical laughter.

Her laughter is contagious, even in the most extreme of circumstances. So I started laughing and crying simultaneously, and incoherently told her that nothing was funny. This made her laugh even harder.

"What do you want me to do?"

"Get me off this freaking toilet!"

"Obviously. But how?"

I explained that she'd need to move the wheelchair out of the way, come into the stall and grab me under the armpits and help pull me up as I attempted (once again) to stand. This she did with ease, all the while laughing at the ridiculousness of the situation. She pulled me up, helped me adjust my skirt (which, incidentally had fallen into the toilet during one of my attempts to get up) and held me for support as I awkwardly pivoted and flopped into my chair. Once sitting, she helped me bend my stiff legs, flushed the toilet and pushed me over to the leaky sink. We both washed our hands and headed out the door of the bathroom towards my classroom. Unfortunately, though, despite Jasmine's heroic rescue and a relatively crises-free resolution to another failed bathroom venture, I could not fully get it together. Jasmine stopped pushing me a few feet away from my classroom door and -- still laughing -- told me I could not go into my classroom.

Recognizing nothing other than the urgent need to have a teacher in a classroom of 28 14 and 15 year-olds, I stupidly asked why.

"Ms. Hooks, no disrespect, but you look like you just got bitch slapped in the face."

The comment made me laugh so hard, that my tears almost stopped completely. I hastily tried to rub the smeared eye makeup away from my under eyes and waved air towards my face in a completely ineffectual effort to return my face to its normal color. I looked up at Jasmine and asked if I looked any better.

"Um, not really."

So I escorted Jasmine to her physics classroom first, told her teacher that she was late because she was helping me, and turned towards my classroom.

When I rolled through the door, an audible silence spread through the room. I guess it was obvious that I'd been crying. I avoided eye contact with all 28 pairs of eyes in the room, turned on the LCD projector and told everyone to start the quiz. In an unprecedented demonstration of obedience, they all opened their bags, got their notes out and started on the quiz. Quietly.

Except Antonio. Obnoxious and adorable Antonio got out of his seat, walked to the front of the room and hugged me.

A hug, at that point, was the very last thing I needed; I am completely unable to maintain my composure when I'm that raw and someone treats me with any semblance of tenderness or compassion.

I cried. Again. In front of all 28 students. The very last thing a teacher should ever do.

I (Still) Remember Running.

2010-03-06T11:31:00.000-08:00

There are certain things that bring memories to the surface: music, food, old emails, journals, photo albums, etc. There are times when submerging yourself in the past is necessary, and times when prior melodramatic rantings make you laugh, make you cringe, make you relieved that in spite of what you felt at the time you are finally Grown Up. Other times, however, there is only one word that adequately summarizes the act of reveling in the past: masochism. As someone with a disease that precludes most of the activities that I enjoyed for the first nineteen years of my life, I'm generally cognizant of this and know that -- when I'm in a funk -- I should not watch a track meet on TV, or go to one of my student's cross country races, or look through pictures of myself prior to 1997. There is one aspect of this, however, that no matter how much I try, I cannot control: the weather. Track is a spring sport, and even though I was officially diagnosed with MS in the fall of 1997, there is no time of the year that hurts as badly as the first few days of spring. I have lived through twelve springs since I last ran, and you would think that with the passage of time it would get easier. At the very least, I hoped to feel less raw over time. This, unfortunately, is not the case.

There are countless things I cannot do anymore. Most of these are things that I grieve silently on a daily basis: putting my pants on in less than twenty minutes, reaching items off of a tall shelf, hanging my clothes before they are wrinkled beyond recognition, and -- though it might sound unfathomable to a healthy person -- I truly do miss vacuuming, cleaning toilets and mopping the kitchen floor. These things, though, connote a certain level of dull (though mostly manageable) pain, and the pain is generally superseded by an ugly level of guilt. Things that I no longer do are things that other people now do for me, and I cannot seem to accept -- despite continued reassurance from friends and family -- that this is okay.

Nothing, though, nothing at all compares to the grief I associate with running. My friend Eric asked me once (a few years back) if I remembered what it felt like to walk. The answer was, surprisingly, no. He and I both agreed it was probably preferable to forget. Why then, I wonder, do I still remember how it felt to run? I can still feel my heels strike the rubber of the indoor track, and feel my quads burn through the last 100 meters of an 800. I remember the moments between "Set" and the gun, when I'd take a half step forward, lean forward over my right leg and silently repeat the mantra "I can do this and I will do this". I remember my high school track coach telling me he wanted me to run so hard that as I rounded the turn towards the final stretch I wished he would shoot me to put me out of my misery. Let me be clear, I have no delusions: running hurt, and there were days (lots of days) when I whined and complained and wished I had one iota of the hand-eye coordination that other sports necessitated. But I didn't, so I ran. And though it occasionally made my muscles burn and my mouth taste like blood from the overuse of my lungs in the cold weather, it became part of my identity.

I've heard that people who lose limbs still have occasional phantom sensations: an itch, a twinge of pain, the sense of hot or cold. Running is my phantom sensation. When I face the window and close my eyes tightly, I can still feel it. I can feel the miracle of my nerves making my muscles contract when I want them to, and feel the impact of the ground beneath my feet. When I open my eyes this memory knocks the breath out of me, and it's all I can do to remind myself, in a totally different context, that I can do this and I will do this. But there are no words: it is so damn hard.

My Mom

2009-12-31T22:44:00.000-08:00

To this point, I’ve successfully avoided writing a story about my mom. The obvious question is why, but the answer isn’t easy. My mom takes the brunt of my emotional crises while trying her best to convince her 5’4” petite frame that she can help me get all 5’10” of my stubborn body off the ground. This relationship, to me, seems particularly parasitic, because after raising me for eighteen years I proceeded to almost immediately replace my teenage surliness with a neurological disease. And while I made it through college and grad school and remain physically out of her hair while teaching in Baltimore, I still spend most of my summers with my family in Ithaca. I should note, too, that while I reserve a certain amount of selfless stoicism for my students and friends in Baltimore, when I’m around my mom, self-pity, fear, sadness and anger creep into my daily repertoire of emotions with an alarming frequency. This leads to a whole new unproductive emotion: guilt.

In the spirit of honesty, too, I am more than a little angry with her sometimes. Mainly because I’m here and I’m scared and sad and lonely and -- let’s face it -- she is half responsible for that. Also, though, because moms are supposed to make things better, and she can’t. She cannot make this better.

But man does she try.

I can’t remember now if it was last summer or the summer before, but it doesn’t really matter. All of my summers in Ithaca are characterized by long, lazy swims in Cayuga Lake. Except when it involves me, nothing about anything is really lazy, and pretty much everything requires a little bit of help.

(Or a lot of help as the case may be.)

Swimming in the lake takes a lot of problem-solving. My family does not own lake-front property, so it’s not like I can just wheel to the edge of the dock and dump myself into the water. Instead, my mom and I drive down a winding, gravelly, steep road to a secret and secluded spot at the water’s edge. There we have to park a few meters away from the beach to prevent the car from getting stuck in the gravel (which, incidentally, has happened), and I need to walk approximately twenty steps down a rocky hill to get into the lake. This past summer, it became painstakingly obvious that twenty steps were not going to happen, so I somehow convinced my mom that it was a good idea to get onto the ground and roll. Minutes later, dirty lake pebbles stuck firmly to my thighs, I rolled gleefully into the cold water. To clarify, the water was in the mid-70s – which sounds balmy enough unless you’re in it. It was also choppy. Specifically there were white caps, and once in the water, bracing myself amidst the tumult to adjust my goggles proved impossible. Declaring my leaking goggles “good enough”, my mom tossed me my buoy, I slipped it between my legs and took off.

Except I didn’t really “take off” anywhere – the waves made the quarter mile swim to my friend’s cottage seem like a complete impossibility. I felt like I had been dropped into an endless pool and the resistance was way, way too high. Three strokes forward and breathe to the right, three more strokes forward and another breath. On the sixth breath I tried to look forward and realized I was approximately one meter closer to my destination than I was when I started. I also got a mouthful of lake water in the face and a wad of seaweed wrapped uncomfortably around my neck. I kept going, but on the next stroke a wave managed to knock the buoy out from between my legs. I stopped swimming, attempted to stand on the rocks and watched as my blue buoy got sucked out towards the middle of the lake. Not knowing what to do, I inched closer to the shore and called to my mom, who was walking along the shore with my dog,

“MOM! I lost my buoy, I need to head back.”

It was shallow enough that I didn’t think I would drown, but a growing sense of panic was rising inside of me. Every time I got hit in the face with a wave, it grew, and when I looked for my buoy it seemed further and further away. I continued back towards where I'd started, but it proved difficult. It’s funny, when I explain to other swimmers that I can’t use my legs when I swim, the response is generally some variation of, “I don’t use my legs either!” What these people fail to understand, though, is that their legs are either significantly more buoyant than mine, or they use their legs more than they know. First of all, I am the densest person in existence – I cannot float. At all. If it weren’t for my strangely innate Will to Live, I’d stop flailing my arms for long enough to prove it to all disbelievers: I would drown. So without a buoy between my legs, I swim at a forty-five degree angle until my shoulders feel like they will spontaneously combust, then I either grab onto something, reach for a buoy (which I usually keep in an accessible location – not the middle of the lake), or panic.

Logically, the water was shallow enough that I could pull myself through the water using my arms. Two things, however, made that difficult: the waves, and the sharp mussel shells on the bottom of the lake. I attempted the arm-crawl technique for the first few minutes, but keeping my head above water was impossible with the apparent tsunami-conditions of the lake. Plus I cut the bottoms of my hands. So I headed out to the deeper water and tried to swim with all four limbs. Luckily, since I hadn't gotten too far in my journey before losing the buoy, I finally saw my car on the beach, and could just barely make out my mom's silhouette. I let the waves push me towards the shore, arm-crawled a few more feet and pushed myself onto my knees to pull the foggy, leaky goggles off my face.

"I made it!"

I then noticed that my mom was wet. Her shorts and shirt were saturated. My dog was in the car. I immediately imagined the worst: my dog had pulled my mother into the lake.

"What happened? Why are you wet?"

Before I relay her answer, I must offer a few crucial details about my mom: 1. She does not swim. She knows how to, but I have no actual memories of my mother doing anything other than splashing around the shallow end of a sparkling clean pool when I was a toddler. 2. She finds the lake "gross". When I tell her stories of being choked by seaweed, or encountering water snakes while swimming, she visibly shudders. Even on the nicest, hottest days at Cayuga Lake, she stays on the shore and utters hyperbolic statements such as, "I wouldn't get in that water for a million dollars." 3. Even while walking along the shore of the lake with only my dog, she is put together. I am a huge advocate of donning sweatpants, t-shirts and even the occassional pair of PJs in public, but not my mom. Even in her scrubbiest lake clothes she would still meet the approval of Stacey and Clinton of "What not to Wear."

So the question, again, was "What happened? Why are you wet?"

The answer: "I jumped in and tried to get the buoy."

Ruminations on the Eve of 2010

2009-12-31T21:34:00.000-08:00

There is an age-old adage that time heals all wounds. I scoff at that adage. Time has done nothing helpful for my neurological disease; rather than healing anything, in fact, it seems that almost thirteen years later, the wound is much bigger; it's now gaping and infected.

I recently joined a group on facebook called (perhaps inappropriately) “fuck 2009.” I joined because any year that starts with a concussion, a spinal tap, and two weeks in the hospital and goes downhill from there, is one I want stricken from my memory. I still possess a stubbornly optimistic streak, and joined under the hope that 2010 will offer some type of reprieve from the downward spiral that seems to have usurped my life’s current trend. Then, sitting on the floor of my bathroom after a messy transfer between the shower and my wheelchair tonight, I had the sickening realization that no year, since 1997, has been better than the last. This realization made me want to flush myself down the adjacent toilet, but realistically I knew I would not fit.

So here I am, on the eve of New Years, wearing my pajamas and wondering if there is any point to resolutions. Practically, I know that the things that clearly need improvement are decidedly beyond my control. Regardless, here is a list of my hopes for 2010. If the universe could cooperate with these aspirations, I’d be most appreciative:

First thing first: I need to rediscover my coping mechanisms. They appear to be MIA, and I’m desperate for their return.
I want to keep my job. I have no concerns about teaching right now: my kids learn, they love me and I them. It’s a symbiotic relationship of sorts. But the hassle of life in general is getting, well, a bit oppressive. When it takes twenty minutes to put on a pair of pants in the morning, I wonder sometimes if teaching is a realistic long-term plan. Side note, unless aforementioned coping mechanisms are located stat, I must teach. It’s imperative. That is all I have to say about that.
I want to swim again. Swimming is crucial to my sanity, and I haven’t been in the water since August. Turns out you need functional arms to swim. Interpret as you will.
I want to write more.
I want to find replacement agents for my classroom. Actually, I don't want to, I need to – Ashley and Anthony graduate this May, and while I am 100% certain that I will never love anyone as much as I love the two of them; the bottom line is I need help in order to do what I love to do.
It would presumably benefit my arteries to eat less dessert. That’s a tough one though, because self-restraint is not my forte and my roommate is the most amazing baker on this hemisphere.
I want to meet the love of my life. I am currently concerned he does not exist. (I'm equally concerned that if he does exist, I will be too wrapped up in my own anxieties to recognize him.)
I hope not to screw up my taxes this year. Paying the IRS over $500 in December was an unexpected (and most unwelcome) expense.
One of my favorite people in life just moved from Baltimore to Rwanda. I need to find a new friend who makes me laugh even a tenth as frequently as he did.

I feel as though the majority of these resolutions are beyond my control, but perhaps by documenting the things I want, I will be more open to receiving the things I need. Please. Fingers crossed.

Bars, Beers and Bathrooms

2009-12-25T20:20:00.000-08:00

Secretly I don't really get the point of the ADA (Americans with Disabilities Act). Who are these people who determine whether or not a building is "up to code"? Do these people use wheelchairs? Have these people actually seen a wheelchair?

Bars are especially problematic. This poses a problem when you're young(ish), single and want to avoid becoming a social recluse.

A few weeks ago my old teacher friends invited me to Joe Squared Pizza for happy hour. I'd been there before and knew I could get in the building, but remembered a small/inaccessible bathroom -- potentially problematic at this particular point in my disease's progression. Irrationally, though, I ignored these concerns, convinced my roommate to join us, and headed up to North Avenue for a much needed beer (and less needed pizza). Everything was fabulous -- barbecued chicken pizza (yum), sierra nevada beers (also yum) and good company. Unfortunately, though, I was faced with the inevitable need to pee after my first beer and headed to the bathroom while I was still coherent enough to negotiate the potentially problematic toilet situation. I managed to finagle myself through the door, and grabbed onto the sides of the bathroom stall to pull myself up. I shut the door to the stall, pulled down my pants and gracelessly flopped onto the toilet: victory! Shortly after my victorious flop, though, I realized that my descent was slightly longer than usual. In fact my knees were parallel with my chin -- it was some sort of mini-toilet that seemed to be only inches above the ground. Weird. Ready to leave the stall, I grabbed the toilet paper holder with my left hand, the side of the door with my right and leaned forward before pushing up: defeat. I managed to creep about one millimeter in an upward direction before flopping back onto the toilet. Problem-solving in situations like this is rapidly becoming my forte, but there are only so many possible solutions in a bathroom stall. I tried pushing off on the back of the toilet, holding on to the other side of the door, and even opened the door to grab my wheelchair (which wouldn't fit into the stall and was thus completely useless). Ultimately I gave up and convinced myself that someone would inevitably have to pee and would come in the bathroom to help me. So I waited -- all the while wincing at the disgusting toilet seat I was sitting on and wondering when the floor was last washed. Finally, after what seemed like eons, my roommate came in. The first thing she saw when she opened the bathroom door was the stall door open, my wheelchair jammed as far into the stall as I could possibly fit it, and myself, pants down, elbows on my thighs grimacing.

She giggled, "Would you like some assistance?"

"Meg -- I am so glad you came, I have no idea what to do. I've tried every possible way to get off this toilet, and I'm stuck. Does everyone out there think I fell in?"

Meg walked to the stall and pulled my wheelchair out of the way. We decided that I would push up as hard as possible while she pulled me from under my armpits. The plan seemed foolproof: my legs would initiate the proper movement, and Meg's strength would help execute it. Like most of my plans, though, it didn't work -- my legs failed to initiate and Meg failed to execute anything other than a maniacal giggling fit rendering both of us speechless and unable to properly breathe. It really was so absurd. Half of me wished someone would come in to help us, and the other half was so relieved that no one was there to witness the spectacle.

We tried a few more times but kept our success percentage firmly at zero. I decided it was time for Plan B.

"Meg, this is what we're going to do. I'll get on the floor and pull up my pants while kneeling. Then I'll crawl out of the stall to the sink, and I'll grab the sink with one hand and you with the other and get up!" Genius, the plan was pure genius.

Meg didn't like the idea of me crawling around the floor of a public bathroom, but I figured this was no time to concern myself with cleanliness. I pulled up my jeans as much as possible, pushed myself onto my knees, pulled up my pants and began to crawl. The bathroom was pretty small, so I reached the sink in a matter of moments. Once I had the counter firmly beneath my right hand, I pulled my chair closer to my left side and looked up at Meg. All 5'8" of her looked very serious; so serious, in fact, that I started to laugh again. Then she started laughing, and we were both, once again, rendered completely useless.

"We need to focus. We can do this, we just need to stop laughing." Stating the obvious is another one of my specialties.

Surprisingly, plan B was met with even less success than plan A. And now, instead of sitting on the questionably clean toilet, I was stuck on the unquestionably disgusting floor. The upside was that Meg and I were still giggling -- attributable perhaps to the beers we had consumed, but nonetheless preferable to wallowing in what seemed to be a helpless situation.

Just then, a firm knock on the bathroom door interrupted our ridiculous exercises in futility. It was my friend, Peter:

"Hooks, are you okay? What are you two doing in there?"

Meg opened the door. "We can't get Kate off the floor. Care to assist?"

All 6'3" of Peter pushed himself into the small bathroom, rolled my wheelchair out of the way, and heaved me off the ground. It seemed almost insultingly easy for him. I was standing within seconds, buttoned my still unbuttoned pants, washed my hands, and let Meg hold the door while Peter pushed me out.

We returned to our table of friends who predictably asked me what happened.

I intended to share the truth, but Peter beat me to an answer,

"We just had a threesome in the bathroom. It was awesome."

Seattle, Showers and Shrinking Worlds

2009-12-25T19:20:00.000-08:00

(Please excuse the lack of chronology here -- I started this in 2008, and just finished it now)

My hiatus from writing lately seems to correlate with my recent trip to Seattle. Even though my ambitious writing goals for the summer were thrown violently by the wayside, I think this was actually a good thing: I didn’t have time to write. Instead, I spent two-weeks further confirming my mythical impression of a city that lies 3,000 miles away from both my family and my job. Ironically, this burgeoning love affair with Seattle was preempted by dread. I found myself – even once the plane touched down – second-guessing my decision to travel at all this summer. Excitement was obscured by MS-related paranoia, and I realized that I was – in some strange way – yearning for a much smaller world.

My body, in continuing with its ten-year habit of disappointing me, has gotten markedly worse lately. Unfortunately, while this decline should correlate with an increased ability to ask for help, it doesn’t. My body and my mind are locked in a constant battle that – if unresolved – is likely to lock me at home.

Thank God my plane tickets were nonrefundable.

Once I arrived, I’d arranged to stay at my best friend’s new house. Meli and I have been friends since I was 15, so I wasn’t too concerned about “imposing” myself on her; it seemed much more daunting to ask her live-in girlfriend for help. And since Meli works an estimated 125 hours a week for an environmental law firm, while her girlfriend, Maura, works from home, most of my days were spent – at least in part – with Maura. Predictably, a measly day into my trip, my MS-related fears were confronted, and I managed to embarrass myself so thoroughly that my stubborn hesitancy to ask for help was (at least temporarily) superseded by practicality.

Less than forty-five minutes before my friend, Claire, was supposed to pick me up for brunch, I fell in the shower. Usually falling is one of my talents; I like to think of my time spent on the floor as an excuse to sharpen my problem-solving skills – once I fall, I need to figure out how to get up. If at all possible, I like to get up before anyone sees me (especially if I’m not wearing clothes). Once I hit the ground in Meli’s shower, though, no amount of problem-solving could get me up. My absurdly long legs were contorted into a gumby-like position on the floor of a soapy, wet, stall-sized shower. I tried climbing up the shower wall, and finagling my legs into a more supportive position, but every time I moved, my legs splayed out beneath me in the soap scum, and I found myself in yet another bizarre contortion. I sat there for a while, letting the warm water careen over me while I contemplated my options: I could remain on the floor of the shower until Meli got home from work, I could crawl out of the shower and hope for better traction on the bathroom floor, or I could attempt to rearrange myself into a slightly more modest position and call Maura for help.

Obviously I chose option 2. Unable to reach the faucet handle to turn off the water, though, as soon as I pushed open the shower door, my body sort of redirected the stream of water directly onto the bathroom floor. Then I realized that even though the top half of my body was able to crawl out of the shower, convincing my wet and slippery legs to get over the metal lip of the shower stall was an entirely new issue. I was defeated, frustrated and rapidly flooding the bathroom, so pulled myself back into the shower, closed the door and wished really, really hard to be someone else. Then I called for Maura.

“Maura? Can you come down here?”

No response.

So I tried again, a little bit louder, “Maura?! Can you help me for a sec?”

I still didn’t hear her voice, but there were eventual sounds of footsteps on the stairs, so I knew she was heading towards me. From the other side of the door, she asked what was wrong, I told her I was stuck on the floor and needed her help. She came in, reached her arm into the shower to turn off the faucet and -- sensing my desperate level of humiliation -- handed me a towel for modesty’s sake. Then, while trying hard not to cry and make the moment even more awkward than it already was, I reached my arms around her neck and she managed to pull me up. She was so nonchalant it was almost unnerving – it seemed like to Maura, picking naked girls off the shower floor was as common as changing the litter box.

Unfortunately, due to the aforementioned soap scum, I needed to essentially reshower, but Maura passed me the shower chair allowing me to wash my feet with far less peril. Thirty minutes later, clean and dressed, I headed to brunch feeling almost normal.

In addition to extreme (though temporary) mortification, I learned a few things from this incident. The obvious: to use a shower chair while showering. The less obvious: that accepting help -- especially from someone you're not 100% comfortable with -- is mutually empowering. I firmly believe that we are all here to give and to receive with grace. And though I don't know if it is really possible to be picked up off a shower floor with grace, I do know that Maura's calm affect allowed me to preserve as much dignity as humanly possible. I fear sometimes, that my need for help will forever curtail my ability to give back and I will remain a "taker" for the rest of my life. I also wonder if I will ever learn to receive help without a certain (often oppressive) level of guilt and humiliation. I do know though, that if I allow my world to shrink as much as my fears urge me to, I will likely never learn.

Humiliation and Revelation

2009-10-31T22:49:00.000-07:00

Although the most predominating thought that goes through my head these days is a variation of the phrase “I hate MS” (with use of rotating expletives to connote emphasis and avoid repetition), every once in a while my internal monologue is interrupted by a less angry thought: I have amazing friends. To suggest that my appreciation for the people in my life is equal to my hatred for this disease might be an overstatement, but I am certain that without the latter, I would never realize the importance of the former.

I was scheduled to fly to Seattle this past March for my friend Claire’s wedding. Her wedding was in the San Juan Islands, a few hours north of Seattle, so I knew the trip would involve a rental car, navigation between Seattle and the ferry, and negotiation of a hotel that may or may not be accessible. There were a few other obstacles: I had used all of my sick days during January’s stint in the hospital, and would have to take leave without pay for the wedding; I had just received a second treatment of an experimental MS treatment that essentially annihilated my immune system, thus rendering air travel slightly risky; I had zero confidence in my ability to either drive a car without hand controls OR to get successfully from Seattle to the ferry terminal without ending up in Canada; I had a fear of unfamiliar hotels ever since spraining my knee in an accessible hotel bathroom years ago. All told, I really didn’t want to go. Plus my dress didn’t fit anymore, so I would have to trek to the mall prior to the wedding (almost as daunting as the trip itself).

I expressed these fears to several people and the majority – bride included – advised that I cancel my flight. Taylor, however, was in the minority. Even after explaining all of the potential for disaster, he still agreed to be my platonic date/chauffeur, and ultimately convinced me that a trip to Orcas Islands in mid-March was well within the realm of possibility.

I have an astoundingly small number of friends who I feel comfortable asking for help. Taylor was not, at this point, one of them. Friends that I knew pre-MS are fair game; they grew to know and love me before I inherited my burdensome body. Taylor, however, is someone I met several years post-MS through an ex-boyfriend; two details which made him a less-than-ideal person to rely on for a weekend. I started concocting worst case scenarios in my head, all of which led up to a nightmarishly imagined phone call between Taylor and the ex where Taylor would utter the words, “You totally dodged a bullet – she’s a mess.”

Given the circumstances (real and imagined), Taylor must have offered one hell of a convincing argument because two weeks later, with a new dress neatly folded in my suitcase, I flew to Seattle. Less than twelve hours later, Taylor and I were en route to the San Juan Islands in a rented Toyota Camry.

The weekend – by all standards – was an immense success, but until this disease is fully cured, I should never breathe a sigh of relief and claim victory. There remained one last ferry ride between me and a truly drama-free weekend, but given my successful use of an unaccessible bathroom at the reception (where I was drinking), and my ability to get in and out of a tub shower in the dark (the island lost power), a ferry ride seemed like cake. We arrived at the ferry station and Taylor explained my situation to the ticket collector: our car needed to end up near the elevator so that I could access the upper deck of the boat. The ticket collector alerted the deckhands, and Taylor was given explicit instructions to wait for the deckhand’s signal before entering the ferry. Once on the ferry, cars lined up bumper to bumper, side by side and there was hardly room for a normal-sized person to squeeze in between the cars, much less a wheelchair. Naturally, there was a miscommunication between the two deckhands, and when Taylor followed the urgent hand motions of one deckhand, our car ended up at the front of the boat nowhere near the elevator. As soon as we parked, Taylor jumped out to see what – if anything – we could do to remedy the situation. Realizing the improbability of backing the twenty cars behind us off the boat, I immediately capped my water bottle and began to mull over an entirely new and altogether worse worst-case scenario: peeing my pants in front of Taylor.

I forced the thought from my mind. It was only an hour ferry ride back to the mainland, and – as a result of two days of excessive wedding festivities – I was severely dehydrated anyway. While Taylor and I chattered inanely about everything and nothing, I painted a desert landscape into the backdrop of my mind and willed myself not to have to pee. This worked fantastically until forty-five minutes elapsed, and somehow the four sips of water I’d consumed over the past 48 hours managed to fill my entire thimble-sized bladder. At this point I dropped out of conversation entirely, and focused instead on holding it until we arrived in Anacortes. One of the approximately 9.3 million problems with MS though, is that holding it really isn’t an option. I finally forfeited my pride and told Taylor I had to pee.

Taylor, unlike the majority of guys I’ve met in life, was at least slightly forward-thinking, and had anticipated this dilemma and knew that we were close enough to the front of the boat to access the deck hand's bathroom on the lower level. Immediately after my "I have to pee" admission, Taylor walked in to scope it out. He came back to the car and said it was disgusting but doable, so I relaxed a little. He got my chair for me and while I was transferring from the Camry to the chair, said he'd be right back and once again disappeared into the bathroom. Assuming - as most would - that he was using the bathroom, I started to wonder why he (someone who can hold it) would choose this time to go. By the time he emerged, my need to pee immediately usurped my curiosity and the two of us headed into the concrete-floored bathroom cell together. I rolled up to the toilet, preemptively wincing at what was sure to be a urine-stained disaster and was pleasantly surprised that it wasn't as bad as I feared. I unbuttoned my jeans, let Taylor help me stand and pull them off and flopped onto the seat for instant relief. Moments later, hands-washed and back in the car, I remarked that the bathroom was nowhere near as disgusting as I'd feared. Taylor responded nonchalantly:

"Yeah, I cleaned the toilet with paper towels and soap before you used it, but I didn't do the greatest job."

This disease is humiliating, humbling and demoralizing; I have lost even the smallest bit of control over things that I used to take so easily for granted. Without this loss, though, would I ever know that a friendship's true value could be revealed in a filthy, ferry bathroom?

My Agents

2008-12-23T20:07:00.000-08:00

As a teacher I have a lot of other teacher friends. I do not, however, have one teacher friend with special agents. I have two.

To be completely honest, I don't even remember how or exactly when my two homeroom students appointed themselves as my agents, but I do know that this would be an exceptionally rough year at school without them.

This whole MS thing (at the risk of sounding obnoxiously repetitive) has gotten significantly worse. In fact, it seems to be getting worse on a daily basis. I'll spare you the details. Suffice to say my priorities have once again shifted (or narrowed). A year ago my daily goals were threefold: to improve as a teacher, to exercise my dog, and to swim. Currently my only goal is to maintain enough independence to keep my job. When I'm at school I am granted at least eight blissful hours of reprieve from my otherwise constant self-loathing on behalf of this damn disease. Teenagers don't allow for such self-indulgent activities; they require constant attention (generally, in one form or another, all at the same time). So from 7:45 - 4:00 my internal monologue resembles as unbalanced washing machine: it is frenetic, overstimulated and unable to rest. There are quizzes to grade and lessons to plan and power points to create and students to counsel about all things non-academic and administrative memos to read and parents to call and papers to edit and....you get the point. Self-pity on behalf of MS does not factor into my daily thought process. At least not until the bell rings. Then my internal monologue resembles more of a broken clothes dryer -- tumbling around and around in circles, wasting energy and never even drying the clothes. It's sort of a mind-numbing type of silent panic that centers on the number of things I need/want to accomplish that my body simply will not do.

It is generally right as the frenetic internal monologue is replaced by this deluge of negativity that my agents show up. And it is almost impossible to fully submerge myself in self-pity mode when they're in my room. To protect their anonymity I'll refer to them as Agent I and Agent K. Agent I is a fair-skinned, blond-haired 16-year-old, slender white girl. Agent K is the opposite: darker skin, braided hair, dimpled cheeks on a not-so-slender black male body. They're an unlikely pair, and for whatever reason this makes me love them even more. Originally, I think they appointed themselves as my agents in order to earn service hours (a prerequisite for graduation in Baltimore City). They'd wash the boards, straighten the desks, pick the paper balls off the floor and stack the books on the counter. I, in turn, would add another hour to their service-learning log and thank them profusely. Somehow, though, between September and now my agents have evolved from student-helpers into personal God-sends (especially ironic considering my current relationship with Him).

I cannot figure out why this has happened.

Sometimes they meet me in the parking lot in the morning. Agent K drags my wheelchair out of the back of my Honda Element, and Agent I puts my backpack and lunch bag on the back. They wheel the chair over to the driver's side of the car and -- once I'm in -- wheel me up the ramp. This makes me sound exceptionally lazy, but the truth is, the walk between the front seat of the car and the trunk is getting harder every day. I sort of shimmy along the side of my car, grasping the side as best as I can for balance -- I refer to this as my spider woman routine because the side of my car is such an integral part of the process. If I attempt to move forward without a proper grasp, I fall -- it's happened on more occasions than I care to admit. When I see my agents in the parking lot in the mornings, the fear of falling in front of students or flipping over in my wheelchair with my heavy bag on the back is delayed a few hours. Once the three of us get into the school building, Agent K fishes my coffee mug out of my lunch bag and hands it to another student who fills it with two cups of green mountain deliciousness that keep me awake through at least second period. We then head into the main office where I sign in while my Agents grab my attendance folder and check my mailbox for me before we head towards the back of the building for a ride up to the third floor via the school's elevator (which looks exactly like a smaller version of the Holocaust Museum's model gas chamber). About ten minutes after entering the building, the three of us finally reach my classroom.

No matter how early I attempt to get to school, I am inevitably one of the last people to arrive in the room. And even though it's always before 8:00 and I'm grumpy and overtired and preemptively overwhelmed with the day etc., there is something about my classroom and the kids in it -- doing homework at their desks, or attempting to copy each other's work without me noticing, or sitting on the radiator talking and laughing and complaining about teachers, or asking me forty-seven inane questions before I even reach my desk -- that always makes me feel like my day is going to be okay.

And usually, depending on the level of irritation that my eighth period class leaves me with, it pretty much is. Especially when it ends with my Agents.

Now, five months into the school year, their hours of "service" to me must exceed 100, and even if I write them the two most glowing college recommendations in the history of college recommendations, I still could not ever adequately express my appreciation to my Agents. They still straighten my room and wash my boards, but they also accompany me to my car and help me with my wheelchair and heavy backpack. At my car, Agent K waits for me to pull myself out of the chair and begin the twenty-minute process of getting myself situated in the driver's seat. He pulls the heavy bag off the back of the chair and places it behind the driver's seat while Agent I hoists my chair into the back of the car. A few weeks ago it was rainy and cold and Agent K's brother was picking them up on an adjacent road at the other end of the parking lot. I offered them a ride across the lot and they both climbed in. They were completely situated, seat-belted and everything, and I was still unable to get my stiff legs to bend and get into the car. (After school my legs are particularly problematic -- sort of like having dead tree trunks attached to my body. Tree trunks that want nothing to do with bending/leaving the ground etc.) Agent K noticed the struggle and offered to help. I responded, "What are you going to do, pick them up and force them into my car?" He shrugged, got out of the passenger seat and walked over to where I was still trying to pick them up off the ground. He then grabbed both legs and picked them off the ground. This motion sent me flying backwards -- so I was lying upside down across the front seat of my car. It also sent me into a fit of laughter. I grabbed the steering wheel, pulled myself up, and directed Agent K to bend my legs before picking them up. He did. The two of us finally got all of my limbs into the car and I drove my Agents the whole fifty meters to their ride on the adjacent street.

Which brings me to the day before winter break. The afternoon routine was nearing the end: Agent I heaved my chair into my car and, as I sat half in and half out of my car telling them to have a fantastic Christmas and New Year's, Agent K stated the obvious in the form of a rhetorical question:

"You need help with your legs?"

Have I mentioned that this part of the afternoon routine is just moderately embarrassing?

"Um, no, I can get them."

Agent K continued, "Right, well I can too."

So I let him help, the three of us giggling at the ridiculousness of the situation. Agent I was giggling harder than usual. Defensively I chided her,

"You know this is ridiculous to me too -- most people who can't get themselves into their own cars don't work!"

She stopped laughing.

"I know, Ms. Hooks. You're an inspiration."

With that, Agent K finally got my legs to bend, I arranged them under the steering wheel and said something that I say too often,

"I love you guys."

I say it so frequently that I question its perceived value, but I meant it so much that day that I was worried I would suffocate with my love for them.

We said goodbye and I backed out of the parking spot. Then, filled with more love and gratefulness than this damn disease allows me to acknowledge very often, I cried the whole way home.

Pat and Katie (my new sister!)

2008-08-01T20:31:00.000-07:00

My Brother and Me (pre-speech)

2008-08-01T20:28:00.000-07:00

Living "The Dream"

2008-07-23T22:09:00.000-07:00

Less than three weeks before my younger brother's wedding, I went swimming with my friend, Lizzie. She was house-sitting in a county north of Baltimore. The two of us swam in the in-ground pool in the properly fenced and impeccably landscaped backyard of this house, so naturally I asked for details. The conversation went something like this:

Me: Whose house is this?

Lizzie: My friend’s. We went to college together, she met her husband there, they got married and she’s pregnant with her third kid at thirty years old.

Me: Wow. Three kids, huh? She’s only thirty?

Lizzie: Yup. Three kids, a house with a big yard and a pool, a Labrador retriever and she doesn’t even have to work. Can you believe it?

Me: No – does she really want all those kids? She’s so young.

Lizzie: Yup. She’s only thirty and she’s living the dream.

Me: Whose dream?

Lizzie: Everyone’s; definitely mine.

This is about the time that I realized that Lizzie and I – bless her heart – have absolutely nothing in common. I have tons of dreams. Being a stay-at-home mother of three kids by the time I’m thirty is (thankfully) not one of them. I love labs, but prefer mutts, have never met anyone “forever”-worthy, and have never been keen on yard work. I like to pursue and participate in my dreams: I want my book published; I want to write and travel and swim with the dolphins; I want to be a better teacher every year; I want to write the curriculum for a 12th grade class that examines apathy in the face of history’s horrors; I want to start painting again and to teach myself eight of Chopin’s preludes on the piano; I want to go for a run with my dog while she’s still young, and I want – when this damn disease is cured – to coach track and ride horses on the weekends.

Some of my dreams, I suppose, are just as elusive as finding a rich husband, but they involve my own aspirations and passions; they involve cultivating contentment, happiness and personal success. This does not mean that I want to live my life alone. I want very much to share my achievements and failures with someone who I miss while I’m sleeping. I will not, however, rest the entirety of “my dream” in the hands of someone I have not yet met.

All of this led to a comforting moment of clarity, no wonder I didn’t mind being the single sister at my younger brother’s wedding: his life is closely aligned with Lizzie’s “dream”, but not necessarily mine. This doesn’t mean I successfully avoid occasional bouts of envy - I wish I had met the love of my life in college and I made more money and were as happy and healthy as my brother. Mostly, though, I’m just relieved that out of all the girls he’s dated, my sister-in-law is not only someone I can tolerate, she is someone I genuinely love.

Thankfully I made these revelations a good forty-eight hours prior to the wedding, and had sufficient time to think of a speech for the rehearsal dinner. I stopped thinking about Lizzie’s dream and figured out what I wanted to say. Unfortunately, I completely forgot about my uncanny propensity to cry while public speaking, so my sentiments – while genuine and written with the intent to be expressed eloquently - came out as a blithering diatribe about how my brother reminds me of a dog. Below is what I wanted to say. I owe it to my brother to let him –
and anyone else – know that my intentions were good:

Since I’m a member of the bridal party, I guess technically what I’m about to say should pertain strictly to Katie, but – since the best man's in charge of the speech tomorrow – I’d better say something briefly about my brother too. I want to take some of the pressure off of Uber.

The first book I read this summer was Marley and Me. For those of you who haven’t read it or – for the groomsmen who don’t read – the book is about a badly behaved dog and its owner who comes to love him deeply and unconditionally. I bring this up because as I was reading, I saw a scary number of similarities between Marley and my brother. Marley was a little bit, well, outrageous. If he’d been a human, though, I think he’d have lived his life a lot like my brother: I imagine that he’d dress up as teen wolf for Halloween; he’d buy a brand new, enormous, gas-guzzling truck when a tire fell off his old one; he’d visit his sister in Baltimore and decide to walk to her apartment (alone and with a dead cell phone) in the middle of the night. He and his friends would shave each other mohawks in his sister’s bathroom and he would almost certainly run a marathon on the other side of the country less than a month before his wedding.

Much like Marley, my brother needs a special, patient and selfless companion in his life; he needs someone who can receive and reflect the kind of love he gives: loyal, genuine, enduring and unqualified (though absurd) love. He has found that companion in Katie. When circumstances (aka jobs) bring Pat frustration, she brings him compassion; when impulses get him into trouble (or, most recently, marathons); she offers him patience and support. She brings out the best in my brother and – most importantly – she sees and loves him for the outrageously loyal person he is.

I am proud to call you my sister, Katie, and I wish you both years and years of marital bliss.

So, while I’m not entirely sure that the dog-brother/owner-Katie analogy was completely flattering, I do know that I meant it to be. I also know that – in times that I turn into an emotional basket-case – the written word works a hell of a lot better than a tear-infested oratory.

I still remember that years ago, a close friend of mine was in her younger sister’s bridal party. For months before the wedding, I heard of the misery and humiliation that she endured as the older, single, maid of honor. I guess I just assumed that when I found myself in a similar circumstance, I too would experience such horrifying emotions. I thus modified my expectations accordingly: I prepared myself for endless wedding preparations, the inevitability of an awkwardly fitting and generally unflattering bridesmaid dress, and the potential to – gasp – not have a date by the wedding.

Except for the date part, though, none of my fears were realized. And, since I actively abhor crying in front of boyfriends anyway, my younger brother’s wedding weekend was absolutely perfect.

Post-bath day one...

2008-07-03T15:13:00.000-07:00

Izzy - Day One

2008-07-03T15:09:00.000-07:00

Izzy and Ink Pens

2008-07-03T15:03:00.000-07:00

Izzy

2008-07-03T10:17:00.000-07:00

Ironically, less than 24 hours after writing about my small victory in the lake and the cathartic powers of swimming, my dog managed to knock me over from a sitting position on the floor (she can be a little overly exuberant with her greetings). She sent my right arm into a position never successfully attempted by Gumby, and consequently – a good two days later – my right shoulder remains in an unprecedented amount of pain. I have a relatively high threshold for pain, so it wouldn’t be that big of a deal if I could still swim. But I can’t.

And though I’m tempted to write about my monumental hatred for a sedentary lifestyle, I think I’ll write instead about adopting my dog. I need to forgive her.

A year ago last May, I had a roommate. He and his girlfriend used to jokingly talk about the three of us “time-sharing” a dog. At that moment, the idea sounded somewhat appealing. I wanted my own dog but thought I might need help. The idea of housebreaking a puppy from inside a high rise apartment seemed daunting. Throw the wheelchair into the equation and it seemed downright impossible. Without any real serious thought into the logistics of any of this, though, my roommate’s girlfriend looked up available dogs at the local SPCA. Naturally, there was one puppy. Her name (this makes me giggle) was Monique, and – as all puppies are – she was the most adorable thing I’d ever seen.

My roommate and I secretly conspired to go see the puppy the following afternoon, so I bolted out of school after my seventh period class, picked up my roommate and headed to the SPCA in north Baltimore. The two of us decided we couldn’t bring his girlfriend because she was too impulsive and irrational, so we went alone. Apparently I’d successfully duped my roommate and myself into thinking I could be a reliable voice of reason. This self-assessment could not have been further from the truth.

The second I saw Monique in her puppy run, I looked at my roommate and said, “Oh my God – I need to have her.” He laughed at me, reminding me of the 700 times within less than 24 hours that I’d listed all the reasons why a puppy was a bad idea. I reminded him that he’d help me, and repeated my completely emotional and not-at-all rational statement: “I need to have her.”

That afternoon, I filled out the adoption application and requested that the SPCA hold little Monique for the next 24 hours. Within that amount of time, two simple things needed to happen: my roommate needed to produce vaccination records for his own dog, and the SPCA needed to contact my apartment in order to confirm that my apartment was “dog friendly”. These two tasks proved far more difficult than either my roommate or I imagined: my roommate had lost his dog’s vaccination records and thus needed to find a vet that would see his dog that day and fax the updated records to the SPCA before it closed (at 4:30), and the manager of my apartment was not allowed to admit a “pit mix” into the building without her supervisor’s consent. I assumed these obstacles could be easily overcome and drove directly to the SPCA after school the next day to begin the interminable wait.

I’m generally a firm believer that time goes by much too quickly. As someone who is habitually late and chronically procrastinating, I could definitely benefit from a few extra hours in each day. Stick me behind a desk in the SPCA and tell me to wait for two things that are entirely out of my control though, and time somehow stops. I sat at the fake wood table for what seemed like at least 6 hours. My roommate had no cell phone, so there was no way to check on his status at the vet, and my landlord – who I called at least 17 times that day – could not get in touch with her supervisor. In my head I tried to convince myself that everything would work out if it were meant to, and that getting a dog – as I’d pointed out before – was a highly illogical idea anyway. I knew, though, that as I sat there waiting for a phone call and a fax, it was far too late for logic; reasonable/rational Kate had been taken hostage by an eight pound puppy the day before. It was doubtful that I’d ever get her back.

Then, at approximately 4:27, as multiple staff members were starting to disappear for the day, my cell phone rang. It was my landlord. I put her on with the adoption coordinator and sat there staring at him, searching for any indication – positive or negative – and finding nothing on his expressionless face. When he hung up, he gave me the news: the supervisor said yes. Seconds later, I heard the fax machine as it printed out copies of my roommate’s dog’s vaccination records. An SPCA volunteer went into the back room to retrieve Monique; I paid my $250, put her on my lap, and headed for the door.

Less than 2 seconds later I realized that propelling a manual wheelchair with a squirming puppy in my lap was, well, impossible. Luckily, a straggling volunteer offered to help, and I clutched the puppy with both hands while the volunteer steered me to my car. It was right around this time that I started second guessing my decision: if the volunteer hadn’t offered to help I’d likely still be sitting in the SPCA waiting room with a dog on my lap. Then I drove home. This too was more difficult than I anticipated. Scared out of her mind, little Monique wanted nothing to do with the passenger seat. She stumbled over the center console and, with her sharp little puppy claws, started to climb me. I was forced to abandon my hand controls while I grasped her tightly with my left hand. With my right hand on the steering wheel and my not-so-dependable right foot on the gas, I slalomed down Route 83, praying that my puppy would stay still and that my foot would work for the next ten minutes. When we finally arrived at my apartment building, I realized that my roommate had both my garage door opener and my access card to the building. I pulled over, put Monique on the floor, and called my landlord for the 18th time that day. I begged her to let me in and invited her down to meet the reason behind my incessant harassment. Moments before she arrived to let me in, cute little Monique peed on the floor of my car – the joys of pet ownership were, once again, looking questionable, and we hadn’t even made it home yet. Eventually – with assistance from my landlord – I parked my car and somehow got the puppy and myself into my apartment. I was sweating and my feet reeked of dog pee, but I was relieved: we were finally home!

Then things got worse. I had completely forgotten that my roommate was dog-sitting for the week, and some stranger’s shepherd mix was there to greet me at the door. The shepherd took one look at Monique and started to drool. Within seconds there were foot-long stretches of frothy dog saliva hanging out of her mouth. Convinced that the potentially rabid Shepherd was going to attack the puppy, I tried to strategically place my wheelchair between the two dogs. Unfazed by the drooling dog or her new surroundings, the puppy then pooped right in front of the door and bolted in furious circles around the dining room table. Sliming everything she touched, the shepherd followed the puppy stealthily but was fortunately too fat to keep up. Convinced that Monique could fend for herself, I grabbed a plastic bag off the nearby kitchen counter and slid out of my wheelchair and onto my knees to scoop the poop. I then returned my attention to the dogs just in time to see Monique dodge the shepherd, jet under my wheelchair and sprint directly toward the bag of poop. Before I could grab her, she had the bag of poop firmly clenched in her jaw and resumed her game of keep away with the shepherd.

Defeated, I collapsed onto the floor and called my friend, Anique. The conversation went something like this:

Anique: Hello?

Me: You need to come over right now.

Anique: What’s wrong? What happened?

Me: I just got a puppy. I’m alone in the apartment with the puppy and a random drooling shepherd mix. I think the Shepherd wants to eat the puppy, and the puppy is running around in circles with a bag of shit.

Anique: (This is one of the million and five reasons I love her) I’ll be right there.

Before Anique arrived, two things happened: my roommate arrived home from the vet bringing the grand total of dogs in my little apartment to three. I also decided that Monique was – as a name – all wrong. Monique is a name best suited for a diva, not a puppy that runs around with bags of poop in her mouth. I’d been thinking of names, and had a list of five – only three of which I remember. Deciding that Chloe was better suited to a purebred, and that Sammy sounded a little too androgynous, I settled on Izzy. Not Isabelle or Isadore, just Izzy. It fit her. Thankfully it still does.

I’ve only owned her now for thirteen months, but the number of Izzy stories I could write would fill a novel. She has grown from an 8 pound firecracker of a puppy, into a beautiful (though overly-excitable) 50 pound mutt. She has knocked me flat on my back in public by leaping out of my car to lick the entirety of my face, she has eaten two brand new ink pens and dyed her fur blue and green, she has run through open doors of restaurants to beg for strangers’ food, she has leapt over 5 foot fences in an effort to rescue me from a friend’s swimming pool, and once – while I was assembling my wheelchair outside of a Pet Smart, she escaped from my car and made a mad dash directly through the store’s automatic doors. Once inside, she brazenly interrupted the store’s weekly puppy obedience class and made her way straight to the squeaky toys.

Not one person or thing, though, has ever made me laugh to the point of tears as often as Izzy.

As it turned out, “time-sharing” a dog proved far more difficult than owning one alone (even with a neurological disease). Especially when certain parties involved in said “time-share” prove as responsible as termites. I am no longer friends with my old roommate or his girlfriend, but Izzy remains a constant source of joy in a world that is far too often dominated by MS-related self-pity. So, despite a shoulder whose function is still severely compromised, getting this dog was the best irrational decision I’ve ever made.

Small Victories

2008-06-27T10:12:00.000-07:00

Last Wednesday marked the first victory of the summer: I swam in Cayuga Lake. Let me attempt to explain why I consider this a victory.

My family lives in Ithaca, a small town in upstate New York that is known primarily as the home to Cornell University and as a haven for hippies. It’s a strange little town, and I never truly appreciated its idiosyncrasies until I moved away. I also never appreciated Cayuga Lake until I spent 8 years staring into the garbage infested, oil tinged and vile smelling inner harbor that serves as Baltimore’s # 1 tourist attraction. Up here in Ithaca, though, not only do I get to stare into a beautiful, cold, (relatively) clean lake, I get to swim in it too – which is easier said than done.

My family doesn’t live on the lake, nor is there public access in any MS-friendly location. We know people with highly sought after lake houses, but they generally include a million long, steep, uneven stairs that effectively prevent wheelchair access. Consequently, if I want to swim in the lake, I need to find a place where one can all but drive into the water, I need someone to help me traverse the sharp stones that comprise the lake’s “beach”, and someone to help me get out of the water post-swim. Last summer, thanks to my mom, I found that place – it involves a mysterious key, a rusty gate and a mile of gravelly dirt road that ends up – obviously – at the lake. There is a small patch of grass that accommodates my mom’s car, and an approximately 25 step walk to the side of the lake. With my mom’s patience and help, I usually manage to hobble from the grassy patch to the rocky beach, where I gracefully sink onto my butt and crab-walk into the sub-seventy degree water. Once submerged, I remove my too-small tevas, throw them back to shore, adjust my swim cap and goggles and swim away (have I mentioned how relieved I am that this is not a public beach?).

This whole ordeal was barely feasible last summer, and last summer I was considerably more functional than I am now.

My body wants nothing to do with leaving the bed lately. I put my bathing suit on and break a sweat; I walk down the stairs of my parent’s house grasping the railing so tightly my knuckles turn white; I sit to put on my shoes and spend another ten minutes wrestling with my own feet. When it’s finally time to go out the door and head towards my mom’s car, I use the last of my energy and concentration; every step is planned. If it’s not, I fall, and it’s no picnic trying to get me up. Truly, my body is a phenomenal pain in the ass.

Swimming in the lake, though, as difficult as it’s become, offers me the only peace and tranquility I can find within this body of mine. Thankfully my mom realizes this too; so she sacrifices her summer afternoons to drag me to and from the lake - an activity that likely rivals sticking her finger in electric sockets.

So last Wednesday, I struggled to my mom's car and the three of us: my mom, my slightly spastic dog and I headed to the lake. I couldn’t help but imagine all sorts of catastrophic-type circumstances. What if, while linking arms with my little mom, I lost my balance and wrenched her shoulder out of its socket? What if I fell and she couldn’t get me up (I am, after all, 6 inches taller than her)? Worse yet, what if I got half way through the swim and my arms stopped working and I drowned? I couldn’t even bank on a heroic rescue from my 60 pound lab mix, because her only rescue strategy involves frantically paddling toward me, then paddling/climbing on top of me, and finally pushing my head beneath the water and grabbing my ponytail with her teeth.

(I guess you could call these slightly hyperbolic possibilities.)

It is with these extreme (and slightly melodramatic) fears that my mom, dog and I arrived at the beach, met my friend and swimming partner, Chris, and began the slow and potentially treacherous walk to the water. While my dog sprinted mindlessly in circles, my mom and I worked out a system: she would walk forward a step and stabilize herself, and I would grab onto her arm when she was still (with an unnaturally tight grip) and mentally will my legs to move along after her. It wasn’t the fastest process in the world, but I made it – onto the shore and down the rocky beach to the water. Eventually, with assistance from Chris and my mom, I sunk down into the water crab-style and was free. Unfortunately, as soon as I was fully submerged in the sub-seventy degree water, my dog decided it was a perfect time to swim out to me and practice her rescue strategy. She also decided that the buoy I use to help me keep my legs afloat was more suitable as a floating chew toy, and – as such – it now resembles a chunk of mangled, swiss cheese rather than a swim buoy that any self-respecting athlete would use.

Chris slid into her wetsuit (which seemed like a workout in itself) and the two of us began our swim. I kept the buoy firmly between my legs, relying solely on my arms to pull me through the water; Chris – with a presumed tear in her rotator cuff – pushed herself through the water using only her legs. (I’m certain that if the two of us could somehow combine our functioning limbs, we’d be the Amanda Beards of Cayuga Lake.) We were undeterred though, and the two of us – slow as it was – finished our half mile swim with, if not grace, then at least a respectable amount of determination.

Back at the beach by my mom’s car, Izzy galloped into the lake like the incorrigible water-loving mongrel she is, and paddled furiously towards me; she was either ecstatic to see me and relieved that I’d returned alive, or she wanted the half-eaten buoy (I prefer to assume the former). I dodged her, distracted her with sticks, and began my ascent back onto the rocky beach. Chris and my mom helped me out of the water and back to the car where I hastily removed my cap and dried off. Chris, fighting to pull the saturated wet suit off, managed to smile and say, “This was fun, when will we do it again?”

I opened the door to my mom’s car and Izzy jumped in. She managed to get her muddy paws on both front seats before she awkwardly leapt into the back seat, shook furiously and began rubbing her wet (stinky) body all over the interior of my mom’ car. I glanced over at my mom who looked somewhat defeated at this point, and said to Chris, “Every day that we can!”

My "Bucket"

2008-06-27T10:08:00.000-07:00

I just got off the phone with one of my all-time favorite people. She just broke up with her boyfriend of two years, because – as he explained it – he doesn’t see a future between them. Somewhere in my self-aggrandizing brain, I’ve come to view myself as the only scared, single 20-something alive. Rationally I know this is not true, and though the MS thing definitely sharpens my fear of perpetual singledom, I do not have (nor want) a monopoly on loneliness.

While listening to her tonight, she said something that made me think. She said, and I paraphrase, “People say I’ll find a better guy, but I’m starting to think that everyone’s pretty much a mess. We go through break-ups in order to give us time to breathe and recover enough to deal with another person’s bucket of shit.”

So here I am, an hour and a half later, thinking about my own bucket of shit. It comes in the form of a wheelchair, but inside it there’s all the fear and disappointment and anger that have grown out of a decade with MS. I’m sure there’s other shit in my bucket by now, but everything MS-related is definitely the heaviest for me to carry, and the hardest for me to share. In spite of this, though, I might actually have a leg up on several other single 20-somethings out there: I’m acutely aware of what’s in my bucket. And while I typically reserve the articulation of my MS-related struggles for my journal, anyone I date sees the majority of my “mess” immediately. I guess this should be viewed as a positive. I’ll never ask anyone to go burying through my bucket of shit only to discover the real deal-breaker five years down the road.

In addition to this oh-so-sophisticated bucket of shit epiphany, I realized something else. My friend – MS or not – is hurting just as badly as I ever have. Post-breakup, she’s filled with the same type of fear, self-doubt and sadness as I am. And just because her own “mess” doesn’t include a neurological disease, doesn’t make it any easier to deal with, heal from and eventually share with someone new.

A year and a half later...

2008-06-27T10:02:00.000-07:00

Since it’s officially summertime, and I’m traveling and mooching off my parents rather than maintaining any semblance of gainful employment, I figure now is as good a time as any to start writing again. I never really stopped, but for the past year and a half, my journals have been redundant entries that boil down to two things: an increasing hatred for and impatience with MS, and a concurrent loss of hope in God. My goal is to write despite my inability to get out of this funk. Point being, if you are looking for an optimistic, feel-good-type story, you might want to read someone else’s blog.

That’s my preface.

Lately I feel like I’m chronically raining on someone else’s parade. When friends call with news of marriage, pregnancy, new children, or new jobs, I’m having a harder and harder time answering the simple question, “How are you?” See, I have a few “friends” who – without much prompting – seize the opportunity to respond to the inquiry with a 20 minute soliloquy listing each and every grievance. The maladies are subject to almost daily changes and vary in extremity – from dust allergies to suspected organ failure. The only conclusion I can draw from this is that there are people out there who are genuinely unable to successfully function as humans.

I’m worried I’m becoming one of them.

So I’m learning to dodge the question and substitute a truthful response with a story about my dog or – during the school year – about my students. Sometimes, though, a piece of truth slips out. I’m worried that with it, my stock value as a friend will decline (or, at the very least, become much, much riskier to invest in).

Last week I went to a friend’s to play poker. (Read – to give away money.) I brought my dog with me so she could burn off some energy with my friend’s dog, and in between hands, one of the guys pointed out that she could benefit from some obedience training. That my dog is prone to minor bouts of misbehavior is undisputable: ten minutes into the poker game, she had stolen the other dog’s toys and destroyed them, drank a spilled beer off the floor and launched herself onto my lap to lick my ears and chew my nose. Really though, other than her overwhelming level of excitement and her occasional stubborn streak, she’s a pretty good dog. Especially since she’s still (sort of) a puppy.

Excuses aside, I acknowledged her misbehavior and – while laughing – added, “If I didn’t have that dog to feed, though, I’d definitely have killed myself by now!” I then realized that efforts at levity while alluding to suicide just aren’t funny. Especially since – even though they’re guys and thus generally oblivious to emotions – I think all four of them detected a slightly disturbing level of honesty behind my hyperbole.

I inwardly winced, awkwardly laughed and immediately changed the subject. Without further mention of my dog or suicide, the five of us continued our poker game.

First Period

2007-03-24T09:17:00.000-07:00

I suppose I should write this today lest I wait another week and attribute my current love for my first period class to a bout of temporary insanity. Remember, please, that this is a one-day story of pleasantries and is no way indicative of my actual year-long experience with this class. Remember too, however, that these children are ninth graders and are thus prone to daily vacillations in their behavior.

I, as their teacher, must remember the same thing.

On Tuesday of this week I was perilously close to repeatedly banging my head into a student’s desk. The day wasn’t much different than any other: first period a few students took fourteen minutes to find a pencil; I collected homework to discover that the majority of my students have been lying to me about completion presumably all year; then my second period class decided to “raise the roof” during my attempts to teach and somehow managed to signal the beginning of a human “wave” which swept through my room as I discussed imperialism. The day went downhill from there, and I thus concluded that I would either sacrifice my desire for perfect attendance by getting “sick” on Wednesday, or I would have to show a movie in order to survive the week. As I own a copy of Hotel Rwanda, I opted for the latter and, on Wednesday, preemptively discussed the connection between the Rwandan ethnic conflict and Belgian colonization.

During first period on Thursday, at the midpoint of the movie, I felt myself start to unravel a bit. Despite the fact that I’ve seen the movie twelve times already, the removal of the majority of the United Nations peacekeeping force, coupled with the separation of the Europeans from the Rwandans strangled my idyllic belief that good ultimately triumphs over evil. So, in sticking with my apparent predilection for self-imposed public humiliation, I started to cry. I knew full well though, that if my first period class witnessed my emotional outburst, I would never command their respect again, so I tried really hard to fight off my tears. I expended so much energy attempting to do this, in fact, that I started to sweat and felt my face flush fuchsia. Then it happened: my eyes got wet, and my nose started to run. I tilted my head upwards towards the ceiling and tried to mentally will the tears to stay in my eyes, and the snot in my nose. I knew if I sniffed (which I obviously needed to do) or wiped my eyes with my sleeves, I would attract the attention of twenty-seven pairs of eyes. Such an attraction, in my paranoid mind, would undoubtedly unleash a litany of mini-disasters: the kids would find the undoing of their teacher more entertaining than the movie; I, resenting their amusement at my expense would be forced to act teacherly and mean and turn off the movie; I would be forced to spontaneously invent some type of alternative assignment on the following chapter which I had yet to read, and they would never understand the connection between European imperialism and the mess that currently exists in Africa. God. Please don’t sniff!

But amidst all of my internal pleading, an innocent tear ran down my cheek (bringing mascara with it), and a small line of snot suddenly stretched between my nose and my mouth. It was disgusting. I had to do it. I had to sniff.

The row of kids sitting closest to me uniformly whipped their heads around to look (as predicted), and one of them blurted out, “Ms. Hooks is crying!” (Also predicted.) But then, rather than the predicted sequence of mini-disasters, four of my female students turned to look at me and they were crying too (I have never been so relieved to see other people in tears!). One of my kids stood up to hand me a roll of paper towels (it’s a city school, we have no tissues), and Darrin, whose mom’s phone number is on speed dial in my cell phone, piped up with, “Ms. Hooks, it’s okay – I’m crying on the inside.”

So this is what I conclude: my first period class, while driving me effectively batty all year long, is filled with the exact thing that the movie so pointedly lacks – goodness.

Airports, Cancer, Anger and Sunshine

2007-03-10T09:14:00.000-08:00

Last year I went on a blind date to the Holocaust museum in D.C. Not only was the location intensely romantic, the actual set-up was too - it was planned by my students. In fact, they came along. So did my mom. So my "date", my mom, my students and I all traveled from Baltimore to D.C. on a yellow school bus. My 9th grade students had been raving about their old middle school teacher, Mr. Sanders, for months, so when it came time to organize the field trip a few of them were adamant that he join us as a chaperon. It seemed innocent enough (especially since Mr. Sanders was my little brother's age and had a girlfriend), but in the days leading up to the trip I was bombarded by comments like, "Ms. Hooks, Mr. Sanders is so cute! You'll love him. He looks like a J. Crew model" and, "Ms. Hooks, Mr. Sanders won't care about the wheelchair - he's so nice." Suffice to say, the whole thing started to make me feel a little bit awkward. My kids were right, though - Mr. Sanders was exactly as they described. Plus the fact that he was 3+ years younger than me and had a girlfriend, allowed me to quickly replace my trepidation with appreciation for the 24 year-old "J. Crew model" who took a day off to accompany us to D.C.

That story becomes relevant later.

In the meantime, my ex-boyfriend's mom was diagnosed (for the third time) with cancer. The chemo treatments seemed to be effective until about two weeks ago, when the cancer decided to spread to her brain. While my ex-boyfriend is really more of a current friend than an actual ex, there was a good ten-minute span of time when I thought he had to be "the one" merely because I loved his family so much. I still do. So after Eric and I tried (unsuccessfully) to date, we remained friends - a relationship that has been far more sustainable than any romantic endeavor ever was. So now, every time I fly home to visit my family, I visit Eric, his wife, and his family as well - I'll never find in laws that I love as much as I love them.

Anyway, when Eric told me about his mom, I could not stop crying - it was pathetic, actually. One of my best friends was telling me about his mom, and I couldn't even keep it together to offer support or ask proper questions. Plus, I am completely incomprehensible when I'm crying, so even my meagre efforts at compassion sounded much like my mom's 8-pound shitzhu howling. Comforting, I know. So I decided to fly home the following weekend to visit her; there wasn't much to say anyway.

Unless a terrorist had commandeered the plane en route to Rochester, NY, I doubt the weekend could have been much worse. But, in the words of Walt Whitman, Eric's mom, Phyllis, is "so much sunshine per square inch" and just being in her presence is like finally holding hands with someone you've liked for a really long time - it just feels right. Warm and still and right. So despite the fact that I think I cried more last weekend, than all other times in my life combined, I am so, so glad I went.

During the flight back to Baltimore, I realized that this was the first time in my life, where the upcoming work week seemed less stressful than the weekend (even though I couldn't remember what I was actually teaching about the next morning). When the plane landed, I got my suitcase, placed it on my lap, and headed outside to wait for the bus that would take me to the airport parking lot. While waiting, I heard someone call my name:

"Ms. Hooks!"

I shuddered a little, assuming that one of my students was at the airport. Cautiously, I turned around. There, looking as J. Crew model-esque and kind as my students had promised, was Mr. Sanders.

"Hey! What are you doing here?"

(Is that not the stupidest question you could ever ask someone who is at the airport?)

So Mr. Sanders and I proceeded to talk - mostly about school - until the bus arrived to take us to the daily parking lot. When the bus arrived, 20+ other people scrambled on, and Mr. Sanders asked the driver to put the ramp down so I could get on. This request, however, seemed to confuse the bus driver, who was unable to operate the ramp. Eventually Mr. Sanders climbed into the bus and manually pried the ramp up and out so I could board, but once I was on, there wasn't really anywhere for me to go. The only empty spot was right next to the driver, and the driver started to explain that he couldn't drive the bus until I was "strapped in."

I fly a lot, by the way, and I take these airport transport buses almost every time I do - I had never been "strapped in" before. I told the driver that wheelchair strapping was totally unnecessary, and went back to my conversation with Mr. Sanders. A few minutes passed and Mr. Sanders was in the middle of his weekend story, when I realized we hadn't moved. I briefly interrupted, and asked the bus driver why we hadn't moved. His response?

"I told you, I need to strap you in."

Why he never made any effort to do this himself alludes me, but apparently the entire bus load of people needed to wait until another airport employee was available for the job. In the meantime, I stopped listening to Mr. Sanders and started to feel my face get hot. I immediately forgot all of my other redeeming features, and traded in my inner peace and social competence for oppressive sentiments of guilt. I was a. embarrassed, b. horribly burdensome, c. ridiculously conspicuous and d. helpless. I wanted to jump out of my wheelchair and throw myself dramatically off the (non-moving) bus, but my MS kept me still. Still and mortified. Then, two men - both in their late fifties - started to get impatient.

One man moved towards the front of the bus, "Hey, why aren't we moving? I have places to be."

The bus driver explained that I needed to be strapped in. This did not appease the angry man.

"Well let me off this bus then, I'm not sitting here for one more minute because of one person."

The bus driver calmly opened the door, and the man squeezed by me and hurriedly stumbled off the bus. His absence provided another angry man the opportunity to berate the bus driver (and, through proxy, me). Angry man # 2 stormed to the front of the bus and began aggressively pointing at me,

"You are telling me that we're sitting here because of ONE person?!" (He continued to erratically point at me. His face was red and the line through his brow was so deep that I thought his head might split open.)

The bus driver said nothing, the man kept angrily gesticulating and telling the entire bus load of people that the delay was entirely my fault, and I started to cry. I also felt like I was in a sauna. So instead of saying something witty to appropriately verbally combat Angry Man # 2, I just sat there sweating while my eye-makeup ran down my face in streaks. At this point, Mr. Sanders had apparently heard enough of Angry Man # 2, and decided to say a few of the things that I would have said if I wasn't silently choking on sobs.

"Excuse me sir, but this is not her fault. You do not have to talk about her like this - she's crying now!"

Angry Man # 2 did not apologize. He looked at me, appeared somewhat pleased to see me crying, and looked back at Mr. Sanders. He continued to coldly stare at Mr. Sanders for the next five minutes while the airport employee (finally) strapped me in, and we (finally) headed towards the daily lot. The entire bus load of people was entirely silent, and the only words uttered between the airport and the lot were directed at Angry Man # 2, and were assertively articulated by Mr. Sanders,

"STOP looking at me like that." (Mr. Sanders has an exceptionally powerful teacher-voice. Though it must be noted - the man did not stop glaring at him.)

Oh, and the best part? Angry Man # 1, who had abruptly evacuated the bus because he had "better things to do than wait" ended up back on board, because no other bus had arrived. It is only in retrospect that I can appreciate the irony of Angry Man # 1's misfortune.

Mr. Sanders and I got off the bus at the first stop in the lot. He helped me get my wheelchair and my luggage off in a reasonable amount of time, and I tried to stop crying for long enough to properly thank him for his help. There were a lot of things I wanted to thank him for, actually, but communication was apparently not my forte last week.

I headed off towards my car (or where I thought I had parked my car. I lose my car in the garage every time I go to the airport. Thank God for the panic button.), and while I aimlessly wheeled up and down the aisles of the dark garage looking for my navy Toyota, I overheard a few girls in the adjacent aisle, at a nearby car. The girls couldn't see me as I was (obviously) in my wheelchair and significantly below eye-level, but they were close enough for me to hear their conversation. This is where my faith in humanity begins to be restored:

Girl # 1: Can you believe the assholes on that bus?
Girl # 2: Seriously. I am so glad that guy finally said something.
Girl # 1: I wanted to do something, but didn't know what to do.

Relieved to know that other people on the bus were more mortified with the behavior of the angry men, than the time we spent waiting for my wheelchair to be properly strapped in, I did what any slightly irrational and extremely emotional person would do: I cried. Again.

Then I found my car, disassembled my wheelchair, shoved my green suitcase in the trunk, and began the 20 minute trek back to my apartment. Except I had a perilously low amount gas, so I had to stop at the first exit I found on 295 to prevent further drama from infiltrating my evening. At the B.P., where the gas was drastically over-priced, I stuck the nozzle into my gas tank, and leaned up against the car while unleaded fuel dripped life into my car and out of my bank account. Listening to the cheesy 80's music that blared into the lot of the gas station, I continued to think - about the weekend and about the angry men on the airport bus. The juxtaposition of people like Phyllis with the two mean men on the bus, was almost disorienting; an extreme example of beauty and goodness on one hand, and unmitigated self-righteousness and evil on the other. It was smothering. And I was on emotion-overload from the weekend anyway, so naturally I continued to cry.

Then a man in a red Subaru drove by me in the opposite direction of the gas station parking lot. I felt him look at for me for a second, and keep driving. He continued to drive for about fifteen-feet, stopped the car, and threw it into reverse. Suddenly the red Subaru was directly across from me, stopped in between the two gas pumps. The man rolled down his window:

"Hey. Miss, are you okay?"

(I've mentioned already that I cannot talk while I'm crying, right?)

I squeaked a barely audible, "I'm fine, thank you", but the man was apparently unconvinced.

"Really? Are you sure? Do you need any help?"

I shook my head, but my continued sniffles caused the man to probe a little further into the state of my disarray.

"What's wrong?"

Noting his persistence, I realized that I had to respond. So I did,

"People were really mean on a bus."

(This must have seemed the singularly most ridiculous thing to hear based on the fact that I was pumping gas into a car, and was no longer particularly near the airport or, for that matter, any means of public transportation.)

The man was apparently unfazed and continued, "Okay. What bus? Where were the people mean to you?" (He was definitely talking to me like I was missing some chromosomes, but I can't blame him. Really.)

I tried then to briefly explain what had happened - I was at the airport and I needed to take the bus from the baggage claim to the parking garage, the driver didn't know how to strap my wheelchair in and two mean men became exceedingly impatient etc. (Please remember, though, that I am standing at my car pumping gas. There is no wheelchair in this man's line of vision. My sanity must have been in question at this point.)

He seemed confused, but calmly reassured me and told me not to worry about impatient, "mean" men. I thanked him for his concern and compassion, he smiled and started to roll his window up. Before he drove off, though, he said one more thing,

"Well, at the very least I hope you had an excellent vacation."

Why I couldn't maintain composure for 30 more seconds is beyond me, but I couldn't. I lost it entirely. Again. The man was appalled,

"God. What did I say? What? What happened?"

Still crying I told him, "I was visiting someone I love very much, and she has cancer and it just spread to her brain and it's so, so unfair."

At that point, the man opened his door and muttered, "Sweetie, you need a hug." Leaving his car running, he walked between the two gas pumps and hugged me. It was a real hug too. I held on tightly, burying my face into the strange man's shoulder while I sobbed. He let me cry for a few minutes before letting me go. When he did, he looked at me very seriously and asked if I'd be all right. I told him I would. He told me not to drive while I was crying. I told him I wouldn't. Then I thanked him and he left.

So that is where this story ends. In a gas station parking lot, with bad 80's music, a strange man and a hug that convinced me - at least for the time being - that everything would be all right.

Blech...

2006-12-10T18:27:00.000-08:00

Not to be melodramatic, but I honestly think this is the worst I've ever felt. And that says a lot, because I don't have the greatest luck in the world to begin with.

I need to vent. This is not a proper blog story where something beautiful happens and I realize that I'm loved and blessed and just generally at peace with the universe. I'm still all those things, but I feel like shit.

I don't know if the aforementioned sentiments are a direct result of health concerns/fears, or if this is all a result of coming off the Paxil, but I currently feel about 2 millimeters away from falling into a waterless gorge. When I discussed this "edginess" with my primary care physician, he responded with:

"Well Kate, you have a lot to be angry with and upset about, the way you're feeling makes a lot of sense. Maybe you should accept the possibility that you might need an SSRI to keep your biochemistry in check..."

I seriously thought about choking him with his stethoscope. Fearing, though, that such a rash reaction would further fuel his conviction that I'm certifiable, I opted for a different approach:

"With all due respect Dr. _____, I will never take an SSRI again. I think Paxil is the devil. I fought my neurologist for 4+ years regarding antidepressants and I cannot adequately express how much I regret giving in."

(Then, naturally, just to add validity to my proclamation of sanity, I started crying and my words turned all gurgled and shaky.)

I continued, "You need to believe me, Dr. ______, I was never depressed. I never had the urge to stab a student in the head with a fork, or rip out my own arm hair with my teeth before the Paxil, so I blame these extremely irrational feelings on the Paxil (or lack thereof). How long will this last? Just someone tell me, how long will this last?"

He didn't really answer. I don't think he knows.

Anyway, so now it's 4 days later and I'm slightly less dizzy/disoriented, but I still feel like unmitigated s-h-i-t. I just turned on Extreme Makeover Home Edition while I was eating dinner, took one look at the woman in a wheelchair getting a new house, and started crying into my veggie lentil soup. So I turned the TV off (lest I see a Hallmark commercial and lose it entirely), finished my soup, folded my laundry, and sat down in here to write.

Really, though, this is all I want:

- A freaking back massage. I think my back muscles are slowly turning into hardened challah bread because I cannot seem to relax.
- Even a small improvement on the MS-front. Just a hint that things might get better post-Zanapax. I'm not asking to run a bloody marathon, but it'd be nice to shower without pulling the towel-bar out of the wall and ending up in a crumpled pile of dripping naked limbs/hastily grabbed towels/metal towel-bars etc. on the floor of the bathroom. That would be so nice.
- Someone to share this with. No. I actually don't want that, because I'd feel so guilty. Or I'd spend all of my time trying to convince the other person that I'm okay and end up feeling exactly as shitty as I do now (maybe even, as history suggests, shittier). But I'm lonely I guess. I really am. At the very least I'd do almost anything (within reason) for the aforementioned back massage. Hmpf.
- Oh. And I'd love to get through a day without crying to Anique, or wanting to roll myself out of my third-floor window during 7th period. Those kids, bless their hearts, are making me want to chug gin at 1:15 everyday, and that would be highly frowned upon by my department head...

There's my diatribe. Advice can be directed to myself and prayers can go straight to God. My faith's a little shaky lately (which actually trumps all of my other concerns right now). I think I need all the help I can get.

Yeah. Blech...

MS-iness

2006-12-04T19:02:00.000-08:00

I haven't written in so long that I actually forgot my username - never a good sign.

The truth is, though, that I've struggled to see the positive aspects of things lately. I write to feel better about stuff - to write myself out of a funk. Lately, though, whenever I pick up a pen (or sit down at the keyboard) I write myself into the exact same place that I started: a little too deep below the surface to see the flowers or the fertilizer around me. This place is dirty and dark, and whenever I climb a little closer to the top, an unforseen swine takes a dump on my head.

I saw my neurologist last week. He confirmed what I already know: things aren't going the way we planned. So I got an MRI to see if there were new lesions on my brain or c-spine (whatever the hell that is), and there aren't. That sounds good, right? - no lesions = no new symptoms. Or so I thought. But the truth is that there are new symptoms. And while I manage to pinpoint an immediate catalyst to blame for every new physical malfunction, the catalyst ends and the deterioration doesn't. I've lost a little coordination in my left hand now (previously my only symptom-free limb), and my right foot and calf have started to go completely numb whenever I swim. Last week I tried to cook while in my wheelchair (I managed to burn pasta), and tried to vacuum on my knees (equally ineffective). Curious as to why I have these new problems and no new lesions, I emailed my doctor a hastily written diatribe of my confusion.

This morning he wrote me back:

Kate - MRIs are only sensitive to inflammation as occurs typically in relapsing MS, I believe that your worsening without change on MRI points towards axon damage from chronic demyelination as is seen in secondary progressive MS.

I guess I knew that already. Lord knows it's been a good seven years since my last "remission", but somehow seeing the words secondary progressive written stung a little more than I thought they would. I rested my chin on my hand and stared at the words on my laptop until my 2nd period students began to trickle in. Then I swallowed the lump and all the other things that threatened to come out of me, and taught for the rest of the day (with a little less patience than usual).

I finally weaned myself off the overly-numbing antidepressant last week.

My timing sucks.

2006-07-29T20:24:00.000-07:00

My brother and me

2006-07-29T20:23:00.000-07:00

My students thought we were twins. We're not.

Why I go to Church

2006-07-16T21:01:00.000-07:00

Jim and I broke up over a year ago, and in my aggressive attempt to be okay, I made myself list all the reasons why I, Kate Hooks, was better off without him. I was very proud of myself upon creation of this list, and did all but publish the eleven reasons in the City Paper. I read it to my friends, re-read it to myself, hung it on my fridge etc. One of the most compelling and real reasons at the time, was that Jim didn't inspire me to be a better person. I underlined that reason and buried it deep inside me - right between the left ventricle of my heart and my internal moral high ground. At the time I was more than a little bit certain that my predilection for beer and my irrational irritation with the string bikini clan at my gym was not caused by my own character flaws, but by Jim. Like I said, my attempt to be okay was somewhat aggressive.

I told my friend, Taylor, about my epiphany. I was so matter-of-fact, so wise and so completely non-judgmental as I relayed my most recent revelations to Taylor; I explained that Jim would be an excellent person for someone, but clearly not for me. I had grandiose plans to be a fabulously selfless individual and do regular physical therapy exercises and eat healthily and start a righteous revolution to improve city schools, inspire urban youth etc. My diatribe culminated with the exclamatory statement:

"See, Taylor, Jim wasn't inspiring me to do these things. He didn't make me want to be better at anything! He obviously wasn't the one..."

There was dead air on the phone for a second, and then my agnostic friend (who, incidentally, I met through Jim) responded:

"Kate, you're Christian. Shouldn't Jesus inspire you to be a better person?"

It was seriously such an innocent question. I could tell that Taylor was genuinely curious; he wanted to understand my quirky walk of faith a little better. But I still wanted to reach through the phone and lodge my cuticle scissors into his ear. I hate it so much when other people are right. I felt like I did when I was six and carved my name into the back of my dad's (new) car and got caught. I was so blatantly wrong and defenseless and six years-old, that I couldn't even offer an explanation. More than twenty years later, I found myself in the same predicament. But Taylor was on the phone this time, and I felt reason # 4 in my quest to be okay dislodge itself from my left ventricle along with my internal moral high ground.

Naturally, I stammered through a weak response to Taylor, and changed the subject.

The thing is - and this is the God's honest truth - as recently as a year ago, Jesus was just some esoteric concept to me. Jesus was someone I grew up with and actively rejected during my high school years. He was someone I ignored in college, and was angry with after getting MS. He let me down. Not only had he let me down, I wondered how anyone could watch the news on a somewhat regular basis and attempt to explain Jesus as a benevolent, loving and living God? The world seemed like a giant, mortally wounded mess.

Six years ago, though, despite this mortally wounded world, I started to think about Him a lot more often; I prayed to Him at night, talked to Him in my car, wrote about Him in my journal, and even started a non-committal tour of Baltimore churches. I slowly let go of my high school-inspired rejection of God, and (even more slowly) of my MS-inspired anger. It was like plucking in-grown hairs, though: almost impossible. Because my anger and resentment and cynicism were as deeply embedded in my personality as my thankfully resilient sense of humor. I pried and prayed and dug and scraped and waited until the answers started peeking through cracks in my calloused skin. The answers came in all shapes and sizes and some came much, much later than I'd hoped for. Eventually, though, I found pieces of myself, and the pieces - not to gloat -were beautiful! They were raw pieces of hope and courage and honesty and faith that were much stronger and enduring than their resentful and angry predecessors.

Like I said, though, this was a slow process. For a while I'd think I was fine and centered and very deep, and then I'd realize that a piece of anger was still hanging around, preventing me from solving my internal rubix cube. I think this is why I was waiting for a person to inspire me. I wanted some faith-filled hero-type to swoop down and rearrange my inside bits until I was all grace and courage and strength. This hero would naturally manifest himself as my boyfriend and - along with his supernatural capacities - would help me with my laundry and would clean my kitchen for me without even asking. With expectations like these, it is glaringly obvious that Jim was a disastrous disappointment. I guess it's also obvious why Jesus remained an esoteric concept who I purported to believe in, but who I neither knew intimately nor aspired to please. Sure, Jesus was responsible for the good pieces inside of me, but I wanted a person to bring these pieces to the surface permanently. Jim didn't do it, my friends didn't do it, my family didn't do it, and even the half-dozen churches I'd visited fell short.

And then, through another friend who I met via Jim, I found New Song. This concrete-constructed building is so un-church-like that it makes the bare-walled Quaker building I attended look elaborate. There are no stained glass windows, or wooden pews. There are no tiled mosaics of Jesus and Mary, or marble bird baths filled with holy water or intimidating "stations of the cross". It's just a hastily constructed cream-colored concrete building in the heart of Baltimore's most "mortally wounded" neighborhood. There are broken cars in the parking lot with their hoods permanently opened, cracks in the pavement in the sidewalk outside and occasional empty bags of UTZ potato chips floating by in the adjacent gutter. But when I went into the church last summer, it was the first time in my 27 years that God was literally palpable.

For me, God is Jesus, but no matter who or what God is to you - even if you don't believe in Him at all - I think you'd feel this too. In fact, I'm positive. There are kids who come without their parents, and Lord the kids are gorgeous! There is this incredibly diverse body of people who are commonly united in a struggle for something. Mostly it's just the struggle to be okay; to recover from their own lives or addictions or loss, but inside this church the struggle to heal is collective, which - in my opinion - makes it so much easier to do. There are a lot of people in the church whose hurt runs deep enough to give even the best scuba divers the bends, and there are others who wade through occasional mud puddles, but inside the building everyone is united in hope and perseverance and - not to sound too cheesy - love. It is seriously the most heart-wrenchingly beautiful thing I have ever seen.

It is inside the walls of this church that I felt Jesus nudging me - ever so slightly - to be a better person. It was the first time in my life that a church-inspired nudge wasn't accompanied by an undertone of guilt. There are no hell, fire and damnation sermons about fixing your life at New Song, just a constant reminder that Jesus loves us all so much, and that the most radical thing we can do in return is to be honest and true to ourselves and to give as much as we can to the people around us in need. The pastor's adopted daughter even gets this. A few weeks ago I cried myself through the two-hour worship service (a hormone-inspired melt-down of sorts), and resorted to paper towels to keep the mess of myself relatively contained. After the service, as I deconstructed my wheelchair to put it into my trunk, she sauntered over to me.

"Miss Kate, why were you cryin' so much?"

I told her that I really didn't know. Just that I was a little sad sometimes.

Her dimpled brown cheeks and warm eyes looked up at me, and her eight-year-old self sheepishly uttered,

"Well, I love you."

(Which of course made me cry again.)

So I guess Taylor was right: I shouldn't want to be a better person for my boyfriend. I shouldn't wait for a hero-type to enter my life and spoon-feed me perseverance and patience and selflessness. Instead I should feed myself (with Jesus' help) and share everything I can with the people at New Song who silently hold me up - week after week.

There are times when Old Angry Kate bubbles to the surface and I feel myself internally lamenting the bikini girls who get in my way at the gym, or I say bad words to no one in particular when my wheelchair breaks at inopportune times. (Both of which happened just yesterday, in fact.) What I finally understand, though, is that I am forgiven and loved in spite of these things. And even when I feel forsaken and forgotten by Jesus himself, I am never really alone in this mortally wounded world.

Which is exactly why I go to church.

The Line

2006-05-30T19:00:00.000-07:00

I know teachers aren't supposed to have favorites, but I definitely do. Kevin is my favorite. He has an identical twin who writes a little better and is quieter in class, but there's something about Kevin that I've never been able to pin point. He and his brother transfered into City from a vocational high school in the neighborhood, and while I'm skeptical of the decision that removed two 17-year-old sophomores from a reputable vocational school to a college preparatory high school, I cannot imagine this year without them.

From the second week of school forth, Kevin has tested "the line" with me. He pokes his head into my classroom on a regular basis and adds insight to my history lessons. His insight usually comes in the form of loud, pseudo-musical utterances of "Baby, baby... UGH!" Then he closes the door behind him and saunters off to the bathroom. He says I walk like a duck, and when I showed my students a picture of me running in college, he responded with, "Wait, why didn't you run like a duck?" I guess he conveniently forgot my introductory spiel in the beginning of the year when I told his class that I'd gotten MS when I was 19.

One day, earlier this year, he told a few of his peers about watching me push my wheelchair up the steps, and I felt him encroaching upon the esoteric "line." He was laughing and his classmates were laughing and, in an effort to take myself less seriously, I was probably laughing, but I'm horribly self-conscious sometimes, and I hate thinking about what I look like to others. I got the class settled and told Kevin - in a barely audible tone - to stay after class. Slightly shaken by my suddenly serious demeanor, he uttered, "Am I in trouble? You callin' my mom?" I reassured him that he was neither in trouble nor about to receive a parent phone call, and reiterated that I only wanted to talk to him for a second.

When the bell rang, his 27 peers charged out of the room, and Kevin remained seated, his already large eyes stretched wider than usual. He watched as I wheeled over to his desk and parked myself two inches away from him.

"Kevin, you're not in trouble, but there's something I want you to understand... I have a really good sense of humor - about pretty much everything, and especially about my MS. But I want to make sure you know that there are thousands of other people with disabilities who aren't anything like me. I'm one of the only people I know that laughs at myself and jokes about stuff that is actually kind of serious."

He looked away. "I know, Ms. Hooks."

I continued, "I mean, I don't want you to start making fun of someone someday, expecting that they'll laugh like I do, because -

"I know, Ms. Hooks. My dad's in a wheelchair."

I tried not to register a look of surprise on my face, and continued the conversation, "Really? And is he in his wheelchair all the time?"

"Yeah, he got shot."

"And do you joke around with him like you do with me?"

"No. Definitely not."

"Well I guess I just want you to know that as ridiculous as I act all the time, I don't want to 'duck walk' around this classroom and push my wheelchair up the steps every morning, okay? You can still joke with me, just -

"I got it Ms. Hooks. I'm sorry."

And with that, Kevin grabbed his Nike backback and left. He still pops his head into my room during just about every period, and he is still the center of attention all the time, but at this point - at least to Kevin - the duck-walk is dead.

Height and Humor

2006-05-29T16:45:00.000-07:00

It is my second year teaching high school in Baltimore, my third year teaching with a wheelchair, and my eighth year with Multiple Sclerosis. I don’t use my chair all the time, but my school is close to the size of the Pentagon, and my balance is slightly worse than that of a two-year-old child’s. Consequently, in order to avoid any MS-related humiliation and/or unnecessary fatigue, I use my wheelchair while I teach my 9th and 10th graders American Government and United States History. This also enables me to wildly gesticulate with my hands while I’m teaching without knocking myself off balance mid-lecture.

During the first two weeks of school, I used my wheelchair at all times. I like to set a precedent – I am a teacher with a wheelchair. And while I get my students used to the idea of a rolling teacher, I also try to convince them of my supernatural powers that compensate for my neurological disease. Namely I like them to believe that I have x-ray vision that enables me to see notes, candy and cell phones hidden inconspicuously beneath their desks, coupled with the unique ability to know when they're lying to me about incomplete homework or class work). Unfortunately for me, all 180 of my students saw through the supernatural power façade before October.

During the second week of school, I stood up during my last period class. I was apparently so excited about the foundations of American government that I could no longer sit still. Grasping the desk to my left, I locked my knees and continued talking. I then noticed that my 7th period class was unnaturally quiet. Not only were they quiet, they were staring at me, and off to the right, Ashley’s mouth appeared to be hanging open. Mid-sentence I started to worry that something was on my face, or that I had a bizarre chalk stain on my boobs. I paused to ask if everything was okay.

Jasmine was quick to respond, “You’re standing, Ms. Hooks!”

I briefly reiterated that I can stand; but I can’t walk very well, and continued with my lesson. Mid-sentence, another hand shot up, and Stephanie asked how long I could stand for. My lesson seemed to diverge from the daily objective. She raised her hand again as I attempted to get the class back on track.

“Wait, Ms. Hooks Kevin’s in the bathroom, right? Can you stand ‘til he gets back and see what he thinks when he walks in? Maybe he’ll think we cured you while he was out.”

While rationally I know that playing practical jokes with my students during the second week of school is not a highly recommended teaching strategy, I couldn’t resist. A few minutes later I heard the door open and Kevin shuffled in nonchalantly. The rest of the students were watching him, waiting for a reaction with bated breath as he sauntered around my empty wheelchair and back to his seat. When he was properly sitting I felt his eyes look down at my feet and move all the way up to my eyes. Then, without raising his hand he interrupted me –

“Ms. Hooks, you are so tall!”

Top Ten Reasons why MS isn't that Bad

2006-05-29T16:39:00.000-07:00

1. If you play your cards right, you could end up spoiled. Not only will family members lavish you with gifts, unconditional love and support, but society will spoil you as well. If you are disabled enough to qualify, you are privy to:

- Unlimited free parking in metered spots and preferable parking in general
- VIP-type seating at concerts, sporting events and other entertainment venues
- Preferred treatment on airplanes as well as discounts on Amtrak trains

2. Undisputable excuses to get out of anything you do not want to do. Examples include:

- Participation in costly, stressful and otherwise laborious weddings
- Attendance at potentially awkward family or coworker gatherings (this might also high school reunions)
- Barbeques or picnics during oppressively hot summer weather or otherwise unappealing conditions

3. A convenient scapegoat for pretty much everything you do wrong. MS no longer stands for Multiple Sclerosis, rather my scapegoat. It comes in handy if you are ever:

- Chronically late
- Occasionally forgetful
- Too lazy to finish something you start
- Too tired in the morning to realize that your socks don’t match

4. An occasional right to entitlement. This does not mean that you are entitled to life as a bitter, irritable human being, only that when things are not MS friendly, you are entitled to small temper tantrums or short-term pity parties. These, while never enjoyable at the moment, often develop into very entertaining stories. You are entitled to a fit if:

- People pity you
- You use a wheelchair and you live in a completely inaccessible city
- It is too hot to properly enjoy the summer without melting your myelin
- You can no longer do something that you really, really loved doing

5. Increased potential for heroism. After an MS diagnosis, you will likely live your life in much the same way you did before. You will exercise, work hard, raise your family, attend social gatherings and maintain your sense of humor. You will not, however, be able to accomplish ordinary goals without the risk of inspiring others. People will likely note your achievements with the added: and she has MS! This is, of course, demeaning and potentially maddening, but will doubtless bring you positive attention and occasional accolades. My advice? Enjoy them.

6. A marked increase in self-esteem. You will develop confidence in who you are, rather than what you do. (Unfortunately this often comes at a heavy price; there are days I was just fine defining myself as a runner.) Post-MS, you will come to know and appreciate who you are with or without the things you do.

7. A legitimate excuse to never wear high-heeled, platform, or pointy, stiff and unforgiving dress shoes. You will rejoice as you save hundreds of dollars on practical and comfortable shoes rather than expensive, trendy and bizarrely uncomfortable shoes.

8. An increased ability to relate to those around you. MS makes you more sensitive and compassionate. This is (unfortunately) a result of increased vulnerability and fear, but it nonetheless turns you into an empathetic person who friends will soon regard as selfless and wise.

9. A genuine appreciation for unconditional love. Eight years after my diagnosis, I am now positive that I have no casual, obligatory acquaintances. My close friends and family members are willing to help me with countless inane tasks – from grocery shopping to cleaning my bathroom. My best friend in college even attempted to run a lap around the track with me on her back, just so I wouldn’t “forget what it felt like to run”. Despite the fact that we both ended up in a heap on the track (I am 5'10"!), her effort was valiant.

10. A well developed sense of humor. Even if you weren’t able to laugh at yourself pre-MS, you will inevitably learn to take things much less seriously. You’ll have to. And when you do, you will find that all the drama and stress of day-to-day life seem a little lighter and a little easier to handle.

Inspiration (?)

2006-05-11T16:14:00.000-07:00

I don't write often enough. This is a problem (albeit minor) caused by:

1. Not having enough time. This, I acknowledge, is a bullshit-type excuse. Sometimes on the weekends I find myself lying leisurely on the floor, staring at the ceiling. I'll roll to the side and my eye might catch my wooden memento box so I'll investigate old letters, poems, cut-outs from my college alumni bulletin etc. I usually find something entertaining or awkward and call my mom to share. While I'm on the phone I might notice the dust that has accumulated on my (old roommate's) TV, or my $35 IKEA desk, so then I clean. I tend to my plants. I vacuum. I do laundry. At the end of a perfectly "free" Saturday my most productive feat is generally some inane household task or a trip to the gym.

2. Feeling a perpetual need to do work. When I was writing my (yet unpublished, so secretly non-existant) book, writing was my "job" so I made it a priority. Now it's just a luxury that I afford myself after my lessons are written, my papers are graded and my students' parents are contacted. I put writing beneath several activities on my personal priority scale: the gym, clean clothes, bills, teacher work, etc. I've come to realize, though, that I will never do enough work to satisfy my job requirements (or my department head) - my lesson could always be a little better, a few more parents could definitely be contacted and the pile of papers really should diminish on a daily (weekly?) basis. That said, I should include writing into my personal job description/priority list. But I don't.

3. A general lack of inspiration. I do not like my job lately. All the beautiful things that happen on a daily basis (and yes, they really do happen!) are shrouded by other bigger and uglier things. Since this blog is not anonymous, I shouldn't elaborate, but since I'm sort of seething, here goes:

- My job, though definitely better than being dragged across hot coals face first, is no longer preferable to Chinese water torture. And while never formally enduring either, I doubt that statement contains much hyperbole. I no longer trust anyone I work for, and while I used to shrug of administrative incompetency and focus strictly on my students, the former is starting to greatly interfere with the latter. Let me elaborate:

I was placed on a Performance Improvement Plan because I taught my United States History students about the genocide occurring in Darfur, Sudan. This led to a highly awkward meeting between my department head, other administrators, my union representative and myself. I was forced to sign a paper acknowledging my own incompetence and inability to adhere with Maryland's "core learning goals." That my students kept pace with the other US History classes was ostensibly ignored. A lot of things were ignored, actually: their midterm grades, the quality of their Darfur essays (in many cases the ONLY writing assignment a few of my students have ever turned in), or their genuine motivation in an educational activity I still characterize as both authentic, relevant and important.
During my scandalous teaching of the first genocide of the 21st century, my students produced posters geared to educate the school and the community. The posters were the greatest things I've ever seen in my 6 years as an educator - graphic and accurate yet hauntingly appealing to the eye. Other teachers came into my room praising my students. One teacher was even crying because what the posters represented is so gruesome and real, and our government is so paralyzed and incompetent and self-involved to do anything about it. Don't get me started. A week or so after I painstakingly hung the posters in the hall, I came into my classroom to find approximately 25 posters in a giant pile on my desk. It made me want to do something rash and loud and violent. It made me want to cry. It made me want to eat my shoes. My students were incensed - especially since the packing tape had stuck the posters to each other (and to the mouse poop on my desk) and their work was - for all intents and purposes - destroyed. I waited until my diaphragm allowed air to properly enter my lungs, and casually rolled myself into my vice principal's office. There, I used my sweetest, fakest voice to ask, "Who took my kids' posters down and why?" The answer? "Ms. Hooks, you are simply NOT allowed to tape things up in the hall. It removes paint... [blah, blah, blah]" I was still violent, but, as ridiculous as her reason sounded at the time, I believed her. I reassured my students that their posters could be rectified and that the tape was ruining the (lack of) aesthetics in the hall and tried my best to forget anything had ever happened.
Which became increasingly difficult last week when a different (tenured) teacher in our school approached me about the genocide in Darfur and asked me help her launch a miniature Save Darfur campaign inside our International Baccalaureate school. As I volunteered to be the 1st floor's representative, this teacher had students hang posters outside of my classroom. (Right next to the Student Government Association's campaign posters and adjacent to the AP/IB testing schedule.) In case you were wondering, the posters are currently taped to the wall.
I was written up for allowing a student to "race down the hall in my wheelchair during the instructional day." This is, I must point out, an egregious lie. Especially she is a self-proclaimed documentation specialist, and the date she cited was a day when I was sick. God bless my journal.

Time out. More soon...

My Brother

2006-03-02T23:51:00.000-08:00

I don't know if I'd characterize myself as a "good sister." My brother Patrick is three years younger than I and we have nothing in common. While I was dressing my stuffed animals and preparing them for make-believe photo shoots and dance recitals, he was playing outside, running around with the neighbors, catching frogs, or watching cartoons. I was bizarre and aloof and inexplicably indignant, and he was warm and acquiescent and eager to please. So eager to please, in fact, that I could occasionally coerce him into Saturday afternoon doll recitals, or even, when I was really lucky, a festive day filled with brother dress-up time. I turned him into a turkey with place mat wings on Thanksgiving, Santa with a stuffed gut and a red turtle neck on Christmas, and an old man with a felt-taped mustache during an interminably long car ride. As I grew up, my taunting games elevated to new levels. I invented the highly entertaining game of "shove and throw," where we'd disappear into the basement after dinner and smash into each other until one of us was unable to get up. I, a foot taller, never lost. He, still eager to please, was always willing to play. We played bloody knuckles on car rides or occasionally just hit each other as hard as possible in the back seat for fun until my dad would yell at us to stop. During all of these games I was the perennial winner, and he the perennial good natured participant. It was something I took entirely for granted - having my own personal punching bag with amazingly resilient human emotions.

When I reached middle school I stopped playing games and turned my chronic pre-teen angst against my brother. My best friend and I would make radio mix tapes in my room and talk about how much we hated our respective families or create master plans to find proper relationships, and my brother would knock on the door to see what we were doing. A typical response:

"Get out of my room, genius boy. Can't you see we're busy? Go get me some juice."

And he'd trot down the stairs only to come back a few minutes later with a glass full of juice. It wasn't until my best friend looked at me and asked, "Kate, why are you so intolerant of him? He'd do anything for you", that I realized she was right, so I changed.

Like any personal metamorphosis, though, it wasn't perfect. I found myself occasionally relapsing into evil big sister mode. For the most part, I tried to put down my anger and redirect it at an equally undeserving recipient, my mom.

I went to high school, got my license and started driving him around. I taught myself how to have civil sisterly conversation: about relationships and sports and our parents. It was my duty, once I was a mature teenager, to impart my wisdom upon my brother (presumably the only person alive who believed I was "wise.")

I went to college and left him alone to tend to our parents and to grow into his own person; a person I was too busy at college to worry much about. We saw each other on holidays and during my breaks from school. Occasionally I could still convince him to do things with me - go for runs or out for ice cream or to jump my car for me when the battery was dead. It was interesting, too - the person he grew into during my absence wasn't bad. I actually liked the guy. I started to think that maybe all of my pre-teen misdirected anger might have had something to do with jealousy. It was possible. My brother was, after all, popular and athletic and funny, and he didn't have pimples or ugly feet like I did. Plus, I used to think my parents liked him better. Yes, I think I was jealous.

The summer after my freshman year in college, I was diligently training for the upcoming cross country season, and asked him to go for a run with me. He said no, he had a lacrosse game later that afternoon and he didn't want to be tired etc. I, unwilling to take no for an answer, bribed him with a post-run swim in a nearby gorge. I told him I'd drive to Cascadilla Falls, we'd go on a short, slow run together, and then go swimming. Hesitantly, he agreed.

We ran our four miles together, and hiked from the road down the rocky, uneven steps to the swimming hole. He'd never been there before. I had. Once again feeling the need to impart my sisterly wisdom upon my impressionable brother, I boldly walked to the edge of the water's rocky edge, and attempted a swan dive into the murky water ahead. My effort at grace was thwarted by a sharp crack as my nose collided with another level of rock beneath the surface. The only thing I remember thinking was, 'get out of the water.' As I pulled my head out of the water, I awkwardly turned around and faced my brother. It was then that I knew something was about to change. The blood rushed out of his face, and, with an expression of sheer horror he mumbled,

"Kate, you are seriously messed up."

That's when I looked down at the pool of blood in the water, and asked him to hand me my white tank top at the water's edge. He did, and I jammed it against my lacerated nose while the two of us began an unsteady ascent to the nearby parking lot.

My brother and I reached my mom's car, and I noticed the blood had soaked through my wadded-up tank-top. I'm sure my brother was talking to me, but I remember nothing other than the pulsating of my entire face. The two of us drove home at approximately 60 miles per hour through winding small town streets, and we picked up my mom. She met us in the driveway, ice in hand, and the three of us drove to convenient care. To make an excruciatingly long story short, I waited a long time, never had my lacerated nose cleaned-out, and ended up with stitches, a broken nose, and a fairly hideous scar. Unfortunately, due to the lengthy wait and the aforementioned "murky" water, I also ended up with three serious bacterium that procreated beneath the stitching and caused a 10 day infection. The infection resulted in hospitalization, fevers, IV drugs etc., and that, in turn, led to Multiple Sclerosis. I guess my immune system went into overdrive - it didn't stop at the nose infection, it attacked my whole nervous system and began diligently eating away at the myelin that coated my nerves. Secretly, while a little misguided, my immune system kicks ass.

So that was my last run with my little brother. Actually, it was one of my last runs ever. I was diagnosed with MS a few months later and my days of "shove and throw" in the basement were definitively terminated (as was my running career).

Shortly after I was diagnosed, I pulled away. From my brother, from the rest of my family and even - to a certain extent - from my friends. I biked when I couldn't run, swam when I couldn't bike, and wrote in my journal when I couldn't do either. I stopped talking to my brother because he couldn't make me feel better, and directed my anger elsewhere. I studied until my eyes yearned for contacts, and then studied more. No longer a runner, I defined myself as "busy" or "stressed." I was too busy to talk to my parents, listen to my brother, extend myself socially, and most definitely too busy to confront the actual cause of my stress. All the while I developed a serious case of resentment. And while my resentment was effectively masked, it took a toll on my relationships. Especially with my brother.

Pat and I spoke occasionally after I got MS, but conversation seemed strained. We continued to have little in common and I was too impatient and angry for inane conversation. When he wouldn't ask about my health, I'd get mad. I defined him as superficial and self-involved in my mind and lumped him into the category of "Those who don't understand."

It wasn't until my 23rd birthday (four years after I was diagnosed), that I stepped outside of myself for long enough to let go of the anger. After years of complaining to my mom or my roommate about his apparent disinterest with my life or my health, I got a birthday card in the mail. It was one of the strangest cards I've ever received, with a giant picture of old people about to sky dive on the front, and the cheesy phrase, I just know something wonderful is out there waiting for you, on the inside. It wasn't the card itself, though, that made me abandon my internal resentment, it was the words he wrote. Scratched in manner of hieroglyphics was the following:

Dear Kate,
I got you this card for numerous reasons. First of all, how funny is the picture on the front? Second of all, is sky-diving with old weird people supposed to be considered something wonderful? Third of all, and truthfully, I do see many wonderful things in your future. Not only may you someday sky-dive with geriatric retards, but I think you may win the Pulitzer for your novel. Seriously, though, you are kind of like my hero, and I know that no matter what you end up doing, you will have a positive impact on a significant amount of people. Thanks for being a great sister and helping me grow up. I looked up to you my entire life, and I idolize you now more than ever. Happy birthday, Kate.
Love, Pat

I read the words, checked the return address, and read the words again. Yes, the card was definitely from my brother. It was from the same brother who I'd intentionally injured in my parent's basement and bossed around for over a decade. It was written by "Genius Boy" who obsequiously got me juice whenever I asked, allowed me to dress him up as a turkey, and begrudgingly accompanied me on runs before lacrosse games. It was from the same brother who seemed oblivious to my MS and who, to my knowledge, didn't even know I planned to write a book. He called me a "great sister"? The whole thing took me a while to digest.

Wisdom has nothing to do with age, I guess. Wisdom, I think, is the ability to do what you can with what you have and Pat might be able to do that better than anyone else in my life. He doesn't necessarily ask about my health, and he'll never properly "understand", but he's the only person alive with the ability to send me a card with "geriatric retards" on the front that can still make me cry.

Vegas

2005-11-13T16:06:00.000-08:00

It amazes me how infrequently I follow through with things I say I'll do. I have written countless "manifestos" stating that I, Kate Hooks, will stop drinking, eating whole pints of ice cream, being late, swearing, gossiping etc. Inevitably, though, one or all of my proclamations ends up broken within a week, my manifesto ends up in the trash, and a new, modified version is written to enable the cycle to repeat itself.

Before I left for Vegas, I vowed I would give my gambling money - if I made a profit - to a good cause. Specifically, I decided I would donate half to the genocide intervention fund, and half to Ronic at the grocery store. Secretly I didn't want to give any surplus cash away; I wanted to buy a new pair of jeans to better compliment my recently burgeoning butt (thus the ice cream manifesto). On my way through the grocery line, though, I found myself telling Ronic that I was going to Vegas for a few days, and that if I won any money, I'd give her half. I sort of winced as the words came out of my mouth, because, like I said, I wanted a new pair of jeans.

In Vegas I met Brett and his friend, Keith, and spent the weekend learning why the City's nickname is "Sin City." We all met to watch a bunch of concerts, but managed to spend a sufficient amount of time at the blackjack tables as well. At least Brett and I did (we both have addictive personalities). So 48 hours after landing in Vegas, I managed to leave $280+ richer, with (what I imagined to be) a permanent headache, a perpetual ringing in my ears from the music, and a grand total of 20 minutes of sleep. When I entered my classroom on Tuesday morning, I noted how difficult it would be to keep what happens in Vegas in Vegas, when I looked like I'd been hit by a truck. Fortunately I must look like I've been hit by a truck on a semi-regular basis, because no one seemed to notice.

That Tuesday afternoon, after school, two things happened:

I bought $225 worth of "Save Darfur" bracelets for my students to sell at the school store.

I gave Ronic $100 at Giant.

So secretly, I managed to lose money. And I realize that the Bible emphasizes that you should give just to give, without sharing every "selfless" thing you do with the world. And of course I agree, but I need to emphasize a revelation - giving does amazing things to one's insides. It's like all the self-doubt and disappointment and guilt that riddles a person's inner-most thoughts is immediately superceded by pure hope and love and softness. My headache, gambling guilt, and beer gut-induced self-deprecation became insignificant when Ronic called my house to tell me she loves me. When I gave her the money on Tuesday afternoon, I was shaking, and she started to cry, held up the money and told everyone to "look at what her customer gave her." (Which was rather embarassing, actually). I cried though, too. Especially when she told me that she'd hit that part in her life where she thought she couldn't go on, and that God had sent her an angel from heaven in the form of, well, me. The customers behind me didn't seem impatient or angry that I'd caused a scene, and had forced the already backed-up line to extend a little further down the cereal aisle. The woman behind me asked where the money had come from, and I told her it came, ironically, from "Sin City." She laughed and assured me that "Jesus knows my heart," and doesn't mind if I gamble every once in a while.

My students think I'm crazy for spending $225 on rubber bracelets to fund the African Union, but I think it's good for them to see follow-through from me for a change (especially since I never return their papers on time).

So what is the point of writing this? It's honestly not to prove how virtuous I am or to suggest that I'm an "angel sent from heaven." I'm neither. I'm a mess, and the only reason I didn't leave Vegas with even more money, is because Brett and I were both physically incapable of leaving the blackjack tables while we were up more than $1800 - neither of us has much self-restraint. It is, however, to say that Brett is probably right: Mother Theresa might have been completely selfish in her selflessness. Because hearing Ronic tell me she loves me, and seeing my students wear their green Darfur bracelets religiously, feels much more gratifying than buying a pair of jeans.

Besides, now I have incentive to stick to my "no more consuming entire pints of ice cream in one sitting" manifesto. I need to fit into my current pairs of jeans.

Words

2005-10-23T18:43:00.000-07:00

There are some things that people say that I never forget. Sometimes the words are formative, and sometimes they're destructive. Either way, people's indiscernible fragilities make me cognizant of how frequently I speak, and of how infrequently I think before doing so. Right now I teach 180 high school students - I think about the words that come out of my mouth sometimes when I'm frustrated, and when no one will sit down or agree with my contention that it really is possible for a 10th grader in Baltimore city to stop genocide in Sudan. I told Cortez that I wanted to run him over with my car - what if he becomes an ax murderer as a result of my irresponsible use of hyperbole? What if Cortez, or any of my other students, are like me: ostentatious and ridiculously self-assured yet secretly vulnerable and sensitive to the potentially destructive words of others? I should have studied bugs or worked in a lab training rats.

When I was 16, April, a friend on the track team, told me my stomach was too fat for such a skinny girl. I was 5'10" and weighed 135 pounds, but all of a sudden I was self-conscious about something other than the ferocious zit on my chin. I started doing sit-ups. 11 years later, I gave up because the washboard abs never materialized. I still don't like my stomach, though.

I also remember my high school friend, Selina asking me how I could be so stupid. We were at a friend's house doing math homework my senior year. Some type of trigonometry, I think. I was in 12th grade. I haven't taken a math class or balanced my checkbook since.

In ninth grade I remember Neil telling me I was pretty. He was a curly-haired senior on the cross country team, and I was a gawky long-legged freshman, covered with mud and sweat, topped off by frizzy post-running hair. Still wearing our respective ITHACA cross country mesh tank tops, we were crammed on a yellow school bus on our way from a mid-week meet. I don't remember Neil's last name, nor how I did in the race that day, but I do remember thinking it was some sort of miracle that someone found me pretty. Especially after a cross-country race. People must not have called me "pretty" very often.

Rather than list the innumerable things that I've selectively ingrained into my bizarre memory, I write this to encourage you, when you're breaking up with someone, to choose your words more carefully than one usually does. Sometimes things stick and, like your favorite jeans that you wash with a piece of gum in the pocket, there is no amount of peanut butter or patience that will ever return things to normal. Jeans, post-gum, are always a little bit jacked-up.

When Jim and I broke up, he left quickly. He had to. He was upset, I was upset, and I knew that if he stuck around for more than 8.5 seconds I'd start frothing at the mouth, beating him with my frying pan, or cleaning the toilet with his head. So he packed fast. I was still wearing my pajamas, sitting on the floor, clutching my knees to my chest. Everything around me started to look blurry and the back of the couch was scraping into my backbone and the carpet itched and I couldn't figure out what to do. So, while he packed, I did nothing. I couldn't even think or pray or remember that I was stressed-out about the school year that started in two days. I might have started rocking back and forth a little; that's what crazy people do, I think. I felt like I was going crazy.

A few days later I realized how much stuff he'd left at my apartment. In addition to the mess of what used to be me, he'd forgotten a lot of his crap. CDs. Pictures. Books. A few t-shirts that I'd worn to bed earlier in the summer. Looking for an excuse to call him and hear, "April fools, Kate! I'm coming home, I love you, I never cheated on you etc. etc.", I decided to call him. Since it was August, there was no "April fools!" rather a terse, emotionless conversation which went something like this:

Me: Hey, how are you.
Him: Not great, how are you?
Me: I'm sitting under my desk.
Him: Why?
Me: I just am. Listen, you left a lot of crap here. Do you want me to mail it somewhere, or do you want to come by and pick it up sometime I'm not here?
Him: Neither, don't worry about it.
Me: I'm not going to throw out all of your pictures and books and stuff. Where do you want me to mail it? You left an entire CD of vacation pics here...
Him: Listen Kate, if I left it there, I obviously didn't care that much about it anyway. If it's still in the apartment, sell it on eBay or throw it out - I don't want it back.

Rationally, I knew he was talking about his stuff. Rationally, I knew he probably wanted his books and CDs and pictures back, but felt guilty having me mail them all to his "new" mailing address. Still, the only thing that came out of my mouth was the word, "Clearly." I sucked in a breath of air that tasted like dirt, and the conversation ended shortly thereafter.

I since resolved to throw out most of his stuff. I finished the book that I'd borrowed from him, and gave it to a friend, turned a few of his T-shirts into gym t-shirts and tucked the shoes he'd bought me for my birthday, and the Ray Lewis jersey I'd bought him for his, to the back of my closet, and threw the rest down the garbage chute.

My advice, though, is this: if, while in the process of shredding someone's heart with a rake, you need to move out, please choose your words more wisely if you leave things behind. It's inevitable that you'll forget a few things; material things you can qualify much easier than the mess of a person you leave behind. Speaking from personal experience, though, it's hard enough to think you're dumb at math, or to spend a decade sucking in a non-flat stomach, but it's even harder to be relegated to the status of an over-listened-to CD or a paint-stained t-shirt. Personal resilience only goes so far.

Jenny and Me

2005-10-16T13:06:00.000-07:00

Funk

2005-10-16T11:11:00.000-07:00

To be honest I've been in a funk lately. I guess I don't really know what that means, but if funk is gunky stuff that ruins something that is otherwise good, then that's where I've been. On Thursday I woke up at 5:45, and for the 14th straight day, the sun wasn't out - nor did it show any signs of emerging. The weather outside was wet and gray, my classroom was so cold that my students took the PSATs wearing gloves, and my somewhat frizzy hair was slowly starting to resemble Don King's. I was in a bad mood. I tried listening to festive music, but happy noises irritated me, I tried to pray and my prayers usually came out as lists of requests for myself and others. Meanwhile I was teaching my students about the genocide in Darfur, Sudan, and while the topic should have sparked at least a moderate amount of appreciation regarding my own life, it just depressed me. I decided the world was disgusting, and maybe the best case scenario was contracting the Avian Bird Flu. Our country is entrenched in moral depravity, we're fighting a war that we shouldn't be fighting, people all over are starving to death, the Janjaweed militia is roaming around on camels with M-16 assault rifles killing civilians at a rate of 500 people per day in Darfur, and the "love of my life" cheated on me. Rationally I knew that my own life was fine, but all I wanted to do was eat pint after pint of ice cream and then complain about getting fat. Yes. I was even starting to drive myself nuts.

On Thursday night, after decimating a pint and a half of ice cream and reading about Darfur, I felt heavier. Heavier even than 6 servings of ice cream should make me feel. I sat on the couch to watch TV, but I hate TV. I listened to music, but I'm sick of all my music. I wanted to talk to someone, but I didn't know what to say, and MS stuff is bugging both of my hands, so I didn't even want to write.

I scanned my email inbox and called Jenny - one of my runner friends from Colgate. She's ridiculous and stubborn and filled with magnetism and radiance. She cracks me up. So I called her. I told her I was in a funk and it was absurd and inexplicable and there was nothing wrong, but I needed someone to talk to. She talked. She suggested about 89 things that I know I need to do, but am too lazy to do. I must be insanely annoying to talk to sometimes. The conversation went something like this:

Me: I'm lonely. I live in this stupid apartment nowhere near my friends and it reminds me of my ex.
Jenny: Why don't you move?
Me: I like my couch. But there's still this cheeseburger stain and it reminds me of my ex too.
Jenny: You could sell the couch...
Me: It's really comfortable.
Jenny: Could you talk to someone, you know, just to get some of this out?
Me: I don't have time. My insurance won't pay for it. It won't help - I already know what's bugging me.

(At this point I could almost hear the wrinkles on Jenny's forehead start to form.)

It went on like this until I started hypothesizing that I could die in a car accident and no one would ever find out. Then Jenny, who presumably wanted to flush the phone down the toilet, insisted on coming to Baltimore for the weekend instead. We got off the phone and she said she'd meet me at the train station on Friday night. Begrudgingly I agreed. There is honestly no point in arguing with Jenny once she makes her mind up about something, and even though I'd have to vacuum, I think I needed something to take my mind off of, well, me.

In the meantime, I went to bed, woke up six hours later to another cloud-ridden day, spend my "moment of silence" in homeroom internally calling on God for help, and went about my job of educating the youth of America (I like to sound as important as possible).

Anyway, it was a normal day at City High School. Normal except my 9th and 10th graders passionately assured me that we have a chance to be on Oprah if we continue our endeavors to collectively heighten awareness about Darfur. It was normal until Octavia stayed after school to watch a multimedia presentation about Darfur by the NYT on my archaic laptop, and until perpetually pissy Patricia sent me a rough draft of an email she wrote to the local news station about the genocide in Darfur.

I left school on Friday feeling a little less funky.

Then I went to Giant, the grocery store down the street from my school. I bought an avocado and chips for the weekend, and placed the basket carefully on my lap while I waited in the interminably long line. While not moving, I asked the woman behind me if she knew of any nearby liquor stores where I could actually park and get in with a wheelchair. She didn't, but I could tell she gave my predicament serious thought (more thought than a six-pack of Corona deserves). Then Veronica, the best grocery checker in the Continental United States, poked her head out of a previously-closed line, and saw me. She pointed at me and said, "Hey! I knew I was here for a reason, get over here." I felt bad - I realized I visit the grocery store entirely too often, and I didn't want to cut the line. Before I could protest, though, the woman behind me pushed me, my wheelchair and my avocados forward.

Veronica rang me up. I told her how glad I was to see her, that I'd been in a ferocious mood, and that I loved how she arranged my groceries. Veronica is seriously the most thoughtful checker-outer one can conceive of. She hangs the grocery bags perfectly on the back of my wheelchair, so they never fall off or scrape on the wheels - this is a highly under-appreciated skill.

While she arranged my avocados and chips, she told me that I'd made her think. She told me that bagging groceries really wasn't her calling and she needed to teach or become a nurse. I told her I would find some information for her and that she'd make a fabulous teacher (which she really would). Then the lady behind me told Veronica that she worked at the hospital, and that she too could offer Veronica some career-type help. Veronica looked like she was about to pee her pants. Then, as if this Giant trip wasn't good enough, the nice lady behind me asked Veronica about a nearby wheelchair accessible liquor store. Veronica couldn't think of one either, so I said thanks, acknowledged that this was sign number 895,622 that people with MS shouldn't drink and rolled towards the exit.

Lovely lady behind me stopped me. She said, "I have nothing to do right now, why don't I follow you to the nearest store and I'll go in for you."

"Seriously - this isn't that big of a deal. Don't worry about it."

Suddenly, though, I had a fan base and they were all rallying for me to get beer. Veronica told me to take help when people offered, and that this wasn't a coincidence, and the nice lady behind me continued to insist, and even the older man who looked like he was stoned started waving his fist in the air yelling, "Yes, yes!" And honestly I felt like I was in a movie.

Minutes later, the woman I'd met in Giant followed me to a nearby liquor store where I realized I had no cash. Again, I told her to forget about it. Again, she insisted. So in the middle of a gloomy Friday afternoon, I was suddenly about to accept charity beer from a complete stranger. The woman, whose name was Barb, went into the store and came out with Corona (the perfect compliment to guacamole), and I found my checkbook in my backpack to write her a check. She argued with me about the check, but I gave it to her regardless, and the two of us started talking. I talked to her about my students, and our project on Darfur, and my friend Jenny who was coming in from NYC to rescue me from my self-acclaimed funk. She told me I reminded her of her daughter who'd just died of Cancer two weeks ago. I got out of my car and hugged her and she started to cry.

I still can't think of a solution to genocide or world starvation or the 30,000 people who died in the earthquake last week. I'm still hurt by my ex, I'm still sick of MS and I'm still a little bit lonely. Sometimes I think God is wearing earplugs, and I don't have the patience to wait for a mountain-top experience or a new boyfriend or a cure for my neurological disease, or peace in Africa, but this is what I know:

Veronica shouldn't be working at Giant, but I'm selfishly glad she is.

Barb probably shouldn't have bought me Corona because my liver isn't doing so well, but I really needed her hug and I think she needed mine too.

I had an entirely unfunky, relaxing and cathartic weekend with Jenny and she left in time for me to go to church today.

It's sunny out.

My students want to be on Oprah to save Darfur.

We do what we can with what we have, and sometimes what we have doesn't seem like quite enough. On Friday, though, it did.

Recovery

2005-09-10T08:50:00.000-07:00

I like very much to make sense out of things. Particularly things that are messy. Ideally, I like to find a reasonable explanation for things before I go to bed. Which, I guess, is why I'm a habitual insomniac; some things never make sense.

For almost three months (which, in the grand scheme of things I realize is a short amount of time), I felt my "Jesusy" relationship with Jim fall apart. I felt this as definitively as whether or not I wear socks when my feet are cold in the winter, but I was too lazy to get up and find a pair. Especially since it was summer. I hated the feeling. Jim was, I thought, the one. He was it. So this whole need-for-socks feeling was very bad. Like I was sleeping next to an imposter, except I couldn't really sleep because my feet were cold and nothing made sense.

I can see now, why people stay in abusive relationships, and why drug addicts remain drug addicts until they overdose. At some point in life, we all make a decision that yields some type of euphoric sensation. For drug addicts, I suppose, it's the first high. For others it's the inexplicable intoxication of falling in love. I remember when it first happened with Jim. It was when I told him that I was broken and a complete mess, and he didn't run away with his hands over his head screaming. Brokenness can really only be attended to once it's acknowledged, and even then, it's really just shared and never quite fixed. Still, though, it felt nice to finally breathe properly; to share my insecurities and vulnerabilities - my internal mess - with someone else.

All at once (too quickly really), my inside broken bits were tenderly acknowledged and held and loved exactly as they were, and not how I wanted them to be. I felt like I was free-falling from 18,000 feet above ground, and Jim dropped out of nowhere, handed me a parachute and said, "Hey, this could be fun, can I come along?" To this day, I don't think there's anything as exhilirating or frightening as letting someone really know who you are - especially the messy parts. And this is why I forced myself to "work things out" when imposter-Jim started hanging around more often. I was completely incapable of reconciling the Jim that knew and loved me, with the Jim who moved in with me. I prayed, I wrote, I swam and I cornerned him into biweekly "are we okay"-type conversations. As his answer was an ostensible "yes", I started to think I was going nuts. At the very least I was delusional, and the whole thing scared me even more than my initial descent of 18,000 feet, because suddenly there was no one there with a parachute.

Imposter-Jim was much less sensitive than his long-distance counterpart who I'd started my relationship with; we'd visited monthly and talk on the phone for hours at a time. Once he moved here, though, he watched a lot of television, drank a lot of beer and wanted to go camping all the time. I stopped feeling delusional and reexamined my previously-acknowledged broken-bits. I decided to gather them up and build a wall between me and the Imposter. He didn't seem to notice, he was too busy reading espn.com. I thought maybe he was turning into a goat - something completely lacking in human characteristics, that likes to consume garbage and is incapable of conversation. He started to talk on the phone outside of the apartment, camp more often, and drink even more beer. He stopped making eye contact. Everything seemed forced, and when I'd mention this I was chronically assured that everything was fine. I decided to turn my wall into a fortress with the new broken pieces I accumulated, and started to assemble a few weapons of mass destruction (just in case). The thing is, even with my fortress and weapons, I was still convinced that diplomacy would work and the Imposter/goat would leave, and my fortress would be peacefully disassembled.

It was right around then that I got nuked.

Even before I found out he was cheating on me, my fortress, weapons and all, were systematically annihilated. Imposter-Jim imitated the way I walk.

It was just the two of us in the apartment. We didn't have a couch or anything, so he had the entire living room for his performance; I, his sole audience, was awestruck. It was the ugliest thing I'd ever seen. It was like watching a Discovery Channel special on liposuction when I can't find the remote in time to change the channel. Even then, I usually turn away - not merely because the sight of someone else's fat in a tube grosses me out, but because my own judgment of someone else's vulnerability makes me feel like a nauseous version of Beezlebub. The bile in the back of my throat was more a function of my own judgment than someone else's disgusting fat in a tube, and this meant I was not a good person. At the very least I had a lot of work to do.

When I watched Jim walk across the room like me, there was no remote to change him with. Besides, he was imitating me, and no battery operated anything was en route to curing a neurological disease. So I watched, as the person I loved leaned too far forward, lifted his right leg too high, and grabbed onto my shaky Ikea desk for balance. It was so accurate and so disgusting. My boyfriend was much worse than a goat. I refused to show him how hurt I was. I refused to suggest that my own horrific judgment of liposuction patients was analogous to the fourteen steps he made across our apartment, but I was aghast. Aghast that he saw me like that. Aghast that my inside broken-bits were no longer tenderly held and loved, but regarded as ugly Discovery Channel-type entertainment. Aghast that he didn't realize any of this or feel a semblance of guilt.

I don't remember what I said to him afterwards. I doubt it matters anyway. I just remember the familiar taste of bile that rose to the back of my throat, and the definitive realization that this would take much more than a self-initiated talk to recover from. My vocal chords were too tangled to speak anyway.

Jim and I were not, and never will be "okay." That's a fact I've started to digest by now, but still doesn't make any sense. The bigger question is, will I?

2005-08-09T15:15:00.000-07:00

Right after the triathlon... Lovely orange swim cap, huh?

2005-08-08T07:52:00.000-07:00

Brett and Me (he beat me... but only 'cause I can't swim in a straight line!)

2005-08-08T07:48:00.000-07:00

Our Triathlon Team...."Nutty's Buddies"

Why I'm (sort of) Starting to Like Baseball

2005-08-03T14:52:00.000-07:00

One week remained in my first year of teaching at Baltimore City College High School. Unlike my gullible 6th graders at Morrell Park, my sophomores knew that my gradebook was closed, so planning a structured and scintillating lesson on the United States Government was about as lucrative as the crunches I once thought would give me washboard abs. Instead of agonizing over lesson ideas, or grading work that I had no intention of recording, I threw a few student-written current event summaries into the recycling bin and drove to Frederick, MD with Jim for the weekend. We originally planned to camp, but opted for the Travel Lodge instead, and substituted a Friday night canoe trip for a minor league baseball game. If my memory serves correctly, the Frederick Keys (Baltimore's minor league team) were playing the Nationals. By the fifth inning, the score was still 0 to 0 and my attention started to wane. That's the problem with baseball: there are too many innings and not enough action. I like hockey or lacrosse games and (even though I'm biased) a good fast-moving track meet. Baseball is only one small step above picking the lint out of my dryer vent, so I don't buy season tickets.

On this particular evening, though, I went to a game. I also, for whatever reason, went with a moderate level of enthusiasm (which had something to do with Jim). I drank an overpriced beer and watched the people around me. I tried to concentrate on the first few innings of the game and learned that the letters KKK stand for more than a white supremacist organization founded in 1865, they also represent strike-outs (I was relieved to learn this, but still confused about the absence of African Americans in Frederick, Maryland). Then I lost my focus again and had to pee.

Jim was engrossed in the game and I had my wheelchair, so I wheeled away without discussion. I got about three feet from the bathroom when I passed a girl and her mother. As the girl was approximately six years-old (and thus at eye level), I smiled - I like to convince small children that people in wheelchairs are normal and nice. In this particular instance, it must have worked; rather than gape or walk by me (her mother was literally dragging her back to their seats), she stopped, pulled her mother to a halt, and looked me straight in the eye.

"Hi." I addressed her as non-threateningly as possible so as to avoid having my wheelchair tires slashed by her mother. The girl had thick glasses and stringy blonde hair all attached to a beautiful rosy-cheeked face.

She was literally pulling against her mother at this point, but I could tell she wanted to talk.

"Umm, why do you use that, that wheelchair?" She sort of pointed at my chair and then put the majority of her left hand into her mouth.

Like I said, she was six, right - she obviously had no concept of nerves or myelin or autoimmune diseases that compromise a person's functionality, so I rejected even a cursory explanation of multiple sclerosis, and summed it up like this:

"Do you ever get colds?" (She nodded) "Well when I was 19 years old, I got a cold in my legs. Only my cold won't go away. And just like your nose doesn't work really well when you have a cold, my legs haven't really worked well since. So my wheelchair helps me get places..."

Her mom stopped pulling her and let her listen, and right as I finished my blatantly inaccurate explanation of my neurological disease, the little girl put her hand on my shoulder:

"That happened to you?" (Now I nodded while her eyes got very serious.) "Well I'm really sorry to hear about that."

Then she walked away. I went to the bathroom and started crying. This little girl still makes me cry, in fact, and I don't even know her name. For whatever reason, when she spoke I felt every disdainful look I've ever received in grocery stores/parking lots/malls/restaurants/churches/pretty much everywhere I've ever tried to go, all come back at once. I remembered bouncers turning me away from bars because they assumed I was drunk, the note I found on the floor of my classroom that referred to me as a "crippled bitch", and Darryl, a kid on the track team that I'd coached, who'd imitated my walk. All at once, I felt the memories of eight years worth of shame and preemptive explanations or apologies on behalf of a disease I never asked for, all land straight on my sternum in the form of 18 cinderblocks. So I couldn't breathe evenly for a few minutes (cinderblocks are heavy) and I started to question why it is that small children are so real and honest and pure, while adults are awkward and scared and meek. I started imagining the past eight years of my life if people just asked me what was wrong, said it sucked and moved on, instead of whispering things and treating me like a three-armed circus freak that earns averted looks, blatant stares or pity. I decided the 18 cinderblocks would have felt far less heavy.

So I cried.

Jim thought I'd injured myself in the bathroom (which is, sadly, highly possible). But I don't cry when I'm hurt, or even when I'm sad. I cry when someone acknowledges that concrete blocks are heavy, and that MS (or a "cold" in my legs) does suck. I cried then because a six-year-old, with genuine concern, and innocent inquiry, validated two things: what I felt on behalf of a debilitating disease, and what I want from the people around me. Neither of which I know how to get, and both of which I think I need.

The Keys won that night, but I don't remember the score. I do know, though, that if baseball were more interesting than dryer lint, I never would have gone to the bathroom in the middle of an(other non-scoring) inning. I would have spent one more day with the cinderblocks that I try to forget about, instead of remembering, and receiving, what I need.

2005-08-03T14:48:00.000-07:00

This is Brett, whose butt I plan to kick in the swim portion of the triathlon (even though I can't kick!)

2005-08-03T14:45:00.000-07:00

My brother (whose graduation inspired me to bust my knee in a handicapped bathroom)

Jesusy?

2005-08-02T17:58:00.000-07:00

Last summer I planned to go to Scotland. Sarah, my roommate from my Junior year abroad was working in Edinburgh, and compared to the 27 hour flight from Baltimore to Australia, I could travel to Britain in a mere 9. Without much thought, I booked a ticket on Orbitz, and briefly rejoiced in my impulsive, carefree attitude. I was empowered. I was an independent teacher who'd saved her money wisely, and planned to spend it in style. I would travel intercontinentally alone, with a neurological disease, and it was going to be fabulous.

But that's not exactly how things worked out. First I discovered that Sarah was still, after several months in Edinburgh, living in an un-MS-friendly hostel (she'd assured me she'd be living in a proper "flat" by the summer). Then I had a relapse. To complicate things further, somewhere in between, I'd convinced my co-teacher/favorite friend in Baltimore to travel with me. To clarify: I purchased plane tickets in March, convinced Amy to purchase plane tickets shortly thereafter, found out that the aforementioned "flat" was nonexistent in April, and had a relapse in May.

Relapses vary when it comes to MS, and certain people bounce back without sustaining permanent-types of disability. I, however, didn't. I got a sunburn that turned my skin tone from relatively normal to that of a fetal pig in formaldehyde, presumably melted some precious nerve myelin in the heat, and was suddenly rendered just a little more disabled than I was before. My symptoms were bad enough that I started using my wheelchair in the grocery store, at the gym, when I went to get my hair cut, on trips out to dinner, etc. My legs and coordination deteriorated to the point that I managed to slip in a handicapped bathroom while I was at a hotel for my brother's college graduation, and was forced to use a walker for the majority of May. The relapse was serious enough that the trip to Edinburgh no longer seemed practical. I started to envision my wheelchair wheels stuck between historic British cobblestones, and my friend Amy hauling my wheelchair up stairs while I climbed, a la Spiderwoman, to wherever our destination might be. I saw myself in bars with cute Scottish men and my walker, and concluded, thus, that I needed to cancel the trip I'd already planned. I needed to leave Amy alone with intercontinental travel plans to see my best friend, and spend the summer home, with my family, in Ithaca.

I didn't deal very well with any of these conclusions. Especially when Orbitz refused to refund my tickets, and the various hostels I'd booked throughout Scotland were ostensibly impossible to reach. $2000 poorer, and one geriatric walker later, the school year ended, Amy left for Scotland without me, and I went home to my parents'.

I planned to write a lot, but the keyboard was stiff, and my fingers were MSey and uncooperative. Instead I worked really hard on two things: not taking my anger out on God, and swimming. I begrudgingly had hand controls installed in my car (wince!), and bought "life-changing" jeans for far too much money (no, there is no correlate). Then, though, just as I reached the pinnacle of my pity party, I met Jim.

Jim had been roommates with my closest friend from high school, Meli. The two of them had lived in Seattle for three years, initially building houses for Habitat for Humanity, then living together while Meli continued with carpentry and Jim worked with incarcerated youth. At the end of their three years together, they drove from Seattle to Ithaca; Meli prepared for law school the upcoming fall at Cornell, and Jim prepared to move back to South Florida, where his family lived. When the two of them arrived in Ithaca, I was supposed to be in Scotland. Jim, according to my unwarranted expectations, was supposed to be annoying.

He wasn't.

We spent four days together, Meli, Jim and I, and when he left I felt a little different about things. I didn't think about MS as much. I signed up to swim across the lake. I started writing more. I remembered how to laugh. I thought at first it was the jeans, but after some not-so-challenging introspection, I realized it might have something to do with Jim.

After a decidedly ineloquent email where I attempted to express these sentiments to Jim, we slowly started talking. Then I visited him in Florida where he sat with me on the ground after I'd tripped, and asked me what it felt like to walk. A question that no one had ever asked me before...

A year later I'm still not in Edinburgh. Amy had fun without me and Sarah moved back to Australia. I still use a wheelchair to grocery shop, and I've gotten much, much better at balancing the bags on my lap (a skill I'd never hoped to acquire). I swam across the lake and wrote a book. I found a job teaching that I actually enjoy, and, more importantly I fell in love.

Jim lives in Baltimore now. He drives me absolutely crazy and just dropped a hamburger on my new couch. His feet smell and he's the most self-righteously stubborn person I've ever met. He's passive aggressive and independent, yet undoubtedly the most unconditionally loving and perceptive person I've ever met. No one has ever had this much capacity to break my heart, and the whole thing makes me want to bury myself in a bag of mulch - I'm vulnerable and scared and can so clearly remember the days when just my disease and myself governed my mood... But Jim, and the circumstances that brought him into my life, are what I would characterize as Jesusy.

So far.

So I guess I'm glad, in retrospect, that in spite of a new walker and a $2000 loss, I didn't take my anger out on God. I'll take a grease-stained couch over a summer in Edinburgh any day.

2005-08-02T17:39:00.000-07:00

Jim, Taylor, Sarah and Mike

2005-08-02T17:34:00.000-07:00

Jim and Me

Scars

2005-06-22T08:02:00.000-07:00

How scary is it to love someone? To reach the realization that another person has the unique ability to make you feel as close to nirvana as is humanly possible, yet simultaneously can scramble up your insides as effectively as your roommate shakes the boggle letters around the game's plastic case.

In loving someone, and allowing myself the potential to be hurt, I am positive that God or the universe is trying to teach me something. It is in this certainty, that I find myself fighting between the things I know and the things I want to believe. I know I am more scared of any type of emotional pain that has the potential to take place than I am of getting my blood drawn at the hospital. I think I'm more scared, in fact, of an unguarded heart than I am of my neurological disease. I know that I have a combative amount of self-respect, and it isn't conducive to the word "surrender". I know that I am threatened and challenged and much, much weaker than I'm supposed to be, and that I should probably run (or wheel) in a foreign direction as quickly as possible with armor and weapons, and, if necessary, enter a convent on the way.

This is where it gets tricky, though, because the things I know and the things I believe weigh equally on my faith-filled heart, and this is what I believe: that God won't let my inside bits get too scrambled without His assistance; that love is just a tiny bit esoteric and doesn't always yield self-respect, and this loss, sometimes is okay (because we're not supposed to have that much pride anyway). I believe that scars accumulate sometimes, and that while they're always painful at inception, they don't always compromise the beauty of a person, a heart, or even a relationship. I believe that wheeling or running away is just a little counter-productive, and maybe just a little weaker than even I purport to be.

I believe I am stuck.

Power Struggles

2004-12-27T09:08:00.000-08:00

I took two sick days within one week. One had nothing to do with illness, the other one did. Regardless of the reason, I spent more time without 11-13 year-olds within a work week than I’d become sadly accustomed to. Sometimes all you need is a little space from a situation to recognize its beauty – distance makes the heart grow fonder? College cafeterias make your mom’s meatloaf taste exceptional. Regardless, I was hopeful that a day in bed with a fever would catalyze some sort of epiphany concerning my job: specifically that I’d return to work refreshed, rejuvenated and ready to teach.

The next morning I slept through my alarm. Skip breakfast? Forgo making lunch? Let my chlorine damaged hair dry on its own? Nah – I resolved to drive fast. But then the ditto machine didn’t work (teachers were not allowed to use a modern-day copy machine), the sub hadn’t erased the boards and the kids were early. I convinced myself, with a marginal amount of strain, though, to stay calm, I was an invincible, super-human teacher for America. I would recover from my morning’s frustrations, and reach all of my students in an effort to maintain the program’s creed: “One day all children will have the opportunity to attain an excellent education.” But then, in between second and third period, while there was momentary silence, I briefly reflected on the searing absence of any fever-induced career-related epiphany, and tugged at the end of my dried-out hair – yes, I was awake. This wasn’t a nightmare.

The eighth grade class entered my room resembling a herd of undomesticated, temperamental beasts. Kenny, bigger than his peers, wearing baggy jeans and untied boots, came in last and destroyed the small amount of hope I’d had in his absence. Within the first ten minutes of class, rather than give my students the “excellent education” I was there to provide; rather than observe my twenty-seven eighth graders diligently working on the “drill”, I listened to Kenny offend approximately 90% of the glass. He told Lauren to eat another donut, threw Argent’s hat across the room, made fun of Amanda’s thong, and told me – the teacher – that my head resembled a mop. I contemplated, for a moment, which battle to pick, and opted for the least offensive:

“Kenny, do your drill. Take your hat off – school policy.”

Kenny responded immediately, “Don’t tell me what to do, woman. You look like a pilgrim with those shoes on.”

This, naturally, made me think about my shoes. What type of shoes did pilgrims wear, anyway? One of the 896 reasons why I shouldn’t teach – aside from being apparently paranoid about my shoes - was my inability to avoid power struggles with adolescents. I needed to take solace in the victory of the grade book – Kenny would, inevitably, fail my class and should – based on his academic prowess, fail the entire eighth grade. Even this, however, didn’t appease my need for decisive victory,

“I will tell you what to do, Kenny, because six months into the school year you still can’t figure it out on your own. And next time I want your opinion on my outfit I’ll give it to you.” My eyes bore into Kenny’s and I tried to sound very mean and very threatening. Really, though, the retort sucked; I merely ensured that this issue (starting with my pilgrim shoes and my mop-like hair) would not be dropped. Twenty-seven anxious pairs of eyes turned to Kenny, anxious to see where the confrontation would lead. I attempted to ignore him, to go over the drill, and to redirect everyone’s attention to the board and my sure-to-be scintillating lesson.

Kenny, surprisingly, wouldn’t let it go. I decided to send him to the office. I calmly asked him to pack up his things (I failed to notice that he was still wearing his backpack), and scoured the area for referrals (I was out of them). I found an index card, wrote a hasty note to the disciplinarian documenting Kenny’s lack of respect, and enjoyed a few seconds of silence while the other students watched me furiously write. Just as I finished my scathing index card, I looked up. Kenny was looking at me with a cold, calculating stare. He cleared his throat to ensure that everyone’s attention was directed to him and said:

“Are you done with that yet? Why don’t you walk it over here?”

I rolled my stinging eyes nonchalantly and said, “Because, Kenny, I don’t want to waste my energy on you.”

I knew though – just as the rest of the class did and just as Kenny did – that he had won.

Peggy

2004-11-23T10:11:00.000-08:00

My mom told me once that when I deny people the opportunity to help me, I deny them the chance to be a blessing. I found her words absurd – absurd and inconceivable. I relied on people far too often. I ask my roommates to clean the floors and carry my laundry from the drier to my room, I solicit strangers outside of shoe stores to walk me to my car or women in parking lots to cover me with umbrellas while I assemble my wheelchair in the rain. I’ve always imagined that if I find myself annoying, others would feel the same way.

It was late spring of my third year at Morrell Park Elementary/Middle School, and my students were convinced it was already summer. There were four days of school remaining (not that I was counting), and rather than spend the last hour of the school day listening to my own voice while thirty sixth graders attempted to secretly pass notes and play cards under their desks, I made an impromptu decision to save my own sanity: I took my kids outside.

For the last hour of the school day, I sat on the playground in a chair that one of my students had stolen from the second grade classroom and watched a few of my boys violently hurl a four square ball back and forth. My girls were clustered around my feet talking while other students ran mindlessly in circles. I participated in conversation with the girls while silently praying that none of my kids would climb the chain link fence, inflict pain upon themselves or others, or disturb the high stakes learning that was surely taking place within the nearby portable classrooms. Meanwhile, I got hot.

Since I was sitting, my body temperature didn’t matter much. I didn’t plan on going anywhere until 2:30. That left me 45 minutes to either spontaneously cool down or come up with an ingenious way to get myself from the playground, up the stairs and back to my classroom in time for dismissal. I pushed these thoughts to the back of my head and listened to Peggy and Kari discuss their summer plans. I watched Andrew bounce the four square ball directly into Michael’s face, and I glanced in the general direction of Jessica as she paced back and forth along the edge of the blacktop engrossed in conversation with what appeared to be a twig. All the while, my nerves were getting hotter and hotter and I felt my face flush from the heat. At one point I actually felt my entire nervous system come to a halt on account of the heat. By the time 2:30 rolled around I couldn’t get out of the chair. I felt like three mysterious hippos had descended upon my shoulders.

I didn’t have a whistle to use to get my classes’ attention (and, even if I had, they likely would have ignored it), so I yelled. Approximately 27 of my thirty students eventually gathered around me, and I told them my legs weren’t working on account of heat-induced MS issues and that they’d have to dismiss themselves (this was a risky request).

“Okay guys, you are going to get to the classroom much faster than I am. You need to get your stuff, put up your chairs, straighten the desks and proceed slowly and carefully to the busses. If I find my room in disarray, or hear about you knocking any small children over en route to your busses, we will never, ever go outside again.”

With that they happily scampered up the stairs, to my classroom and, eventually, home. Since I didn’t find anyone subsequently flattened in the hallway, and my room was relatively organized when I finally arrived, I was impressed. For once my homeroom listened to my directions.

Peggy, though, didn’t scramble up the stairs. She and Kari waited for me.

“What are you gonna do, Miss Hooks?” Peggy asked the obvious question just as I was strategizing how to properly crawl up the stairs without ripping my stockings.

I tried to pretend I was someone else – someone without pride issues; someone who had no problem physically relying on twelve-year olds. “Do you two feel like helping me?”

The girls nodded in unison and Peggy answered quickly, “Yeah, what do you want us to do?”

Collectively we decided that Kari would return the chair to the second grade classroom, and that Peggy would help me get up the stairs. She offered me her shoulder while I grasped the chain link fence that led to the building and the two of us began a long trek up the stairs. I mumbled a few words about MS and the heat, and distinctly remember communicating how sorry I was that she needed to worry about how her teacher would get back into the building.

I put more of my weight on Peggy’s left shoulder than any child should have to support, and she literally dragged me – step by school lunch infested step – up the stairs and towards my surprisingly organized and empty classroom. I probably apologized on each step because that’s what I do. There are moments when my guilt is as oppressive as the hippos that had perched on my shoulders that afternoon.

“I’m so sorry about this, kiddo. I guess we can’t go outside when it’s this hot. You shouldn’t have to worry about me…”

Peggy stopped hauling me up the stairs and looked at me very sternly. She was suddenly as serious as I try to look when I’m threatening someone with detention and she with equal gravity,

“I feel good when I can help you, Miss Hooks. I want to help you. I think we all do.”

I didn’t say anything. I just kept holding onto her, and moving my feet, slowly, up the stairs. Safely back in my classroom, Peggy went home and I sat at my desk until I had the energy to erase and wash my boards. All the while, Peggy’s words repeated themselves in my head: I want to help. I feel good when I can help you. I want to help...

So I suppose, when it comes to sixth graders, my mom was right.

Learning to Teach

2004-11-19T11:05:00.000-08:00

In Houston, Texas, the summer after I graduated from Colgate, I learned how to “teach.” I endured five-weeks of Teach for America boot camp and, for the lack of sleep, dining hall food, foot-long roaches, puke yellow-colored, urine smelling Moody Towers dorm carpet, 98% humidity, housing dramas, pedagogical guidebook sessions and Attucks summer school-related chaos, it was an enriching experience. Somehow I left Houston, Texas, with my nerves still moderately functional and the realization that my body works when other people need it to. It held up that summer. My autoimmune disease put up with stress, repeated nights of far too little sleep, and stifling heat and led me to the conclusion that Teaching for America was the right decision. (Even though I knew it wasn’t going to be easy.)

After a week’s insufficient preparation, three other idealistic college graduates and I were turned loose in a classroom of Houston Public School middle schoolers. I taught eighth grade social studies with another prospective teacher for America named John, and two other aspiring teachers taught Language Arts. Our students had failed their eighth grade year, and their promotion to high school was contingent upon passing summer school, and the TAAS. (Texas’ standardized test that gauged whether or not these students were ready for the next grade.)
From 12:00 to 1:00 the four of us taught small group literacy enrichment blocks. This was my favorite part of the day – I didn’t have to worry about engaging a classroom of 20 students with varying needs and interests, I just focused on reading and writing skills with a small group of four students. Two of the students in my group were the biggest trouble-makers in the class – Roderick and Carl the III. Carl, shorter, and rounder than Roderick, enjoyed completely socially unacceptable behaviors – he called people “gay” and shoved desks at girls. He gave my collaborative group a reason to drink profusely every Friday night. Behavior set aside, though, his warm, brown eyes matched his skin, flashed about inattentively, and yearned – silently - for a good night’s sleep. The white part of his eyes wasn’t completely white rather glossy and speckled with broken blood vessels; his pupils were never still. Carl III was prone to fits of rage at inane catalysts, was fourteen years old and stuck in Attucks Middle School, and knew, on a very personal level, of sadness. Roderick was different. He was wiry and tall, with equally soft eyes. He constantly reminded me that physical presence doesn’t constitute attendance. He knew the intricacies of the classroom ceiling better than the alphabet. Occasionally he started dancing in his seat, leave class on his own volition or stare for minutes on end at objects that didn’t move. In my opinion, Roderick and Carl III were the most endearing students in the class.

During our first literacy session, I gave the two of them a newspaper and let them choose an article to read. Carl refused on account of his “sore eyes.” Roderick just couldn’t read. He stumbled over words like “angry”, and couldn’t make sense of a whole sentence after he finally decoded the words. He never gave up, though. The size of our group mitigated his shame; he persisted and read on and never fully understood the content of the paragraphs he struggled through. I still have no idea how Roderick made it to the eighth grade, but I could tell that he genuinely wanted to learn. Over the next four weeks, Roderick’s literacy became my mission, and Carl III became my friend.

I gave up with the newspaper, bought The House on Mango Street, and worked on basic literacy strategies – strategies that I either invented on my own or learned about in afternoon classes. I worked to ingrain two things into Roderick’s amazingly receptive brain – 1. Slow down and re-read anything you don’t remember, and 2. Believe in yourself – these were the only two things I knew at that point. Two weeks later, after ten hours of reading and re-reading, and writing and re-writing, Roderick chose a story out of our book to read out loud. He asked me what I thought it was about, and I told him, briefly, my thoughts. With dead honesty, he looked at me and said,

“No, Miss Hooks, you didn’t get it.”

Roderick decided, for my sake, to re-read the story, and to stop along the way to point out my misinterpretation. He was entirely right – I had missed the point, solely because I was so distracted by his reading ability to actually listen. Roderick didn’t stumble over one syllable. When I commented on his sudden emergence into literary prowess, even Carl III agreed:

“When’d you learn to read, man?”

Roderick just shrugged, mentioned that he wanted to become a famous author, and – two weeks later – passed the standardized test (and my social studies class) for the first time in his middle school career.

Carl the III was different. Carl III, and his identical twin, Carl IV, were the only two students I organized a parent-principal conference with. My three co-“teachers” and I crowded into the summer school director’s cramped office, determined to communicate the severity of Carl III’s impulsive anger, and Carl IV’s tendency to swear at girls, to their tired mother. I knew though – that while I reluctantly concurred with each testament to their inappropriate behaviors – I wanted the identical twins around. Maybe I was intrigued by the fact that they were both on a first name basis with the Attuck’s school police officer, maybe I liked them because they were two hardened 14 year olds with piercingly soft, brown eyes. The boys were simultaneously too resilient to turn their anger inward, and too young to channel it constructively into something else. Regardless, as I listened to my collaborative members lament their occasionally atrocious behaviors, I felt the space around my heart tighten.

Carl III was not kicked out of summer school. He also – despite the fact that he read a lot more fluently than Roderick – did not pass the standardized test at the end of the summer. In his failure, though, he proved that a multiple-choice test does not accurately gauge someone’s brilliance. Carl III described diamonds as “reflecting sunshine like a new car’s bumper” and my own eyes as “deeper than the ocean.” We were reading one afternoon, and he asked me if there was a cure for multiple sclerosis. I told him there wasn’t. He glared at me, simultaneously angry and confused:

“You mean the doctors don’t know how to fix it?”

I was amused at his irritation and responded, “Nope. Not yet.” I smiled convincingly, as if to say, it’s fine, Carl, I don’t mind grabbing onto desks to preclude myself from falling over.

Carl was quiet for a second. Roderick’s eyes just darted back and forth between the two of us. Suddenly, Carl smacked the desk resoundingly. His voice elevated to a level that caused other literacy groups to stop their readings and stare:

“Don’t say that Miss Hooks. Don’t say there’s no cure…”

Still moderately entertained, I put my right hand on top of his chubby fingers, “Carl, there isn’t a cure, though. MS is just something I’ll deal with for a while – just like you’re dealing with summer school and people you don’t like that you’re stuck in class with.”

Carl jerked his hand out from beneath mine. His voice got even louder: “There IS a cure for MS, Miss Hooks! There IS! It’s the Lord Jesus, Miss Hooks. The Lord Jesus will cure you, but you gotta believe. You’ve really gotta believe. I know it!”

My first inclination was to laugh. I looked at his face, focused on the slight tremble in his voice, and suddenly took him very seriously:

“Carl, I pray you’re right. I really do.”

Carl III, whom my co-“teachers” dubbed an “angry little asshole”, was one of the brightest, most faith-filled, and most compassionate people I’d ever met. When he was upset in the lunchroom a few days later, I sat down with him and listened while he spun soggy spaghetti noodles around his spork.

“No one relates to me, Miss Hooks.”

Was I surprised that a 14 year-old eighth grader who passionately asserted that his teacher could be cured by Jesus didn’t have close friends at his lunch table? Not really. Did his insatiable loneliness make it harder for me to breathe? Absolutely.

I swallowed another breath of thin, school lunch-scented air, “It’s tough to find, Carl. It’s really tough to find someone to relate to. It’s especially hard when you’re young.”
He pushed his plastic tray across the table and left his spork intertwined with another pile of tasteless noodles.

“I relate to you, though.”

And that mattered more than anything I’d heard in a long, long time.

The Art Museum

2004-11-11T09:04:00.000-08:00

Make your problems the smallest part of who you are.
- Jack Gantos

My second year teaching I decided that the only thing potentially scarier than a day in the confines of the school building with my students was a day outside of my classroom. Despite the fact that my second year was, in retrospect, my best, I continued to avoid field trips as strategically as the earthworms I'd carefully step around in the rain. I masked worm-related paranoia beneath worm-related concern, just as I avoided potentially harrowing field trips with the selfless phrase, “No, I insist, you chaperone, the trip sounds like so much fun!” Secretly though, I knew that if my classroom management was tenuous within the confines of my classroom, it would be disasterous if my thirty sixth graders were suddenly (shudder) free. I avoided the Science Center excursion with ease – there were extra chaperones and my principal needed a warm body in a second grade classroom. The trip to Towson University was under control without me, and in all other situations I feigned valiance and offered to teach the extra sixth graders (or in some cases, even the class of second graders). I preferred a classroom filled with nose picking, illiterate seven year-olds to a day on a yellow school bus with the potential for sixth grade chaos.

When I least expected it though, it happened. The art teacher organized a trip to the Walters Art Gallery, and Brenda Payne, my sixth grade team teacher, was sick. The art teacher, who used approximately no foresight in planning the excursion, accosted me while I was diligently making my morning copies and singing Jack Johnson just loudly enough to irritate my principal.

She appeared next to me right before I hit the refrain: “Miss Hooks, I need another chaperone for our trip today. Mrs. Payne isn’t feeling well, and we need at least three adults.”

My response: “Hmm… who’s the third adult?”

“I don’t know. Sonny said his mom might come.”

Thought – isn’t this something that one should know before the day of the trip? I tried not to wince, her breath was rancid.

“If you need me, I’ll come, but I’ll need a wheelchair at the museum and someone to watch the extra sixth graders.”

She mumbled something about calling the art museum regarding the wheelchair, and told me that the bus would arrive by 10:00. Silently I thought, “You’re welcome” and I finished my copies.

The morning passed quickly and shortly before 10:00 I sauntered over to the art room. There, the field trip organizer was eating something garlic-ridden and organizing cans of paint. She didn’t look up.

I cleared my throat loudly. I didn’t want to startle her lest she drop the paint, “Are we going? Did you get confirmation from Sonny’s mother?”

She looked at her watch, stuffed more food into her mouth, and muttered something about the bus. I nodded and then opted for plan B: find my students and ask them what was going on. I left the art room and crossed the hall to Brenda Payne’s room. There, without adult supervision, thirty students were running in circles intermittently smacking each other and standing on Brenda’s no longer organized plastic, orange-colored chairs. Brenda was nowhere to be found, and I was dubious that I’d find a clear answer in her room:

I made my most threatening teacher-look and yelled, “Small children! You are acting in manner of wild beasts. You have three seconds to act civilized, or the trip is cancelled!” (They didn’t know that the bus was already waiting in the parking lot.)

Moderate silence ensued; enough silence to allow me to locate Sophie amidst the pandemonium. Sophie was my curly haired, rational, brilliant and mature favorite. I quietly asked her when we were leaving and why twenty-nine of her peers were currently unsupervised (while the art teacher organized her glazes alphabetically). Sophie, as usual, knew all the answers. Mrs. Payne was looking for me, Sonny’s mom was outside with the bus, and the art teacher had already reserved me a wheelchair. Mrs. Payne – though sick – had agreed to watch the remaining sixth graders for the rest of the day.

Grateful for Sophie, I militantly herded the small children from Mrs. Payne’s increasingly disorganized room, and lined them up in the hallway. I was very proud of Chad – he only leapt through the air to hit the emergency exit sign once en route to the bus. Their excitement level was even higher than usual. John made fun of someone’s butt, Chad (after landing firmly on his feet post-leap) hit, poked and otherwise irritated his obvious crush, and Nikki and Tiffany formed a staunch art teacher opposition. (Never mind the fact that as we approached the bus the poor woman was directly behind us.) There, outside of the school, standing in Baltimore’s 85 degree heat and smothering humidity, the art teacher finally attempted to organize the trip.

“Okay, we’re going to see some Asian art at the Walters Art Gallery today. I need three groups of ten students with each adult: one group with Miss Hooks, one group with Sonny’s mom and one group with me.” Before she even finished her statement, ten boys ran towards Sonny’s mom, and the remaining twenty girls formed a suffocating circle around me. As the art teacher patiently attempted to ameliorate the obvious discrepancy between my group of twenty and her own group of zero, Tiffany called her a witch. Tiffany’s peers apparently agreed. The art teacher, in vintage art teacher form, exuded no discernable emotion, rather instructed the "ungrateful" girls to return to the classroom. I stepped in between the scowling sixth graders and the art teacher, glared at Tiffany and followers, and slowly mouthed the word, “Apologize.” Then, after my wordless pleading and a series of muffled apologies from the eventually regrouped girls, thirty-three of us piled into the bus. We were a mere forty-five minutes late.

A brief bus ride later, I had sufficiently impressed my students by knowing all of the lyrics to rap songs on the radio, and I started to wonder why we were about to see Asian art anyway. Sarah, another freckle-faced favorite, asked me a question:

“Miss Hooks, can I push you in the wheelchair today?”

And before I could respond, a fight ensued:

“No, I’m pushing her! I’ve never pushed a wheelchair before and she already said I could!” (I had?)

Then Tiffany chimed in, “But I helped her get to her car the other day when her legs weren’t working!”

And so on.

The fight ended when I promised they could all push me, but they’d have to take turns. Two hours later, the trip culminated with minor horror on behalf of their respective pushing skills (Nikki smashed my leg into the door of the elevator and Tiffany almost knocked over a statue of Buddha). More importantly, though, there were a few revelations:

1. My students correctly answered the museum guide’s questions about Buddhism – they actually retained things I taught them.

2. My students eventually mastered the turning radius of a wheelchair, figured out how to back me safely into the elevator, and realized that, much to their collective dismay, the plush carpeted museum rooms weren't wheelchair friendly. They were equally appalled by the “pull-only” doors.

3. And I realized that field trips, even with garlic-ridden “witch-like” chaperones, poor organization and rented wheelchairs, were nothing to avoid.

The Wheelie

2004-11-10T20:36:00.000-08:00

My third year as a sixth grade teacher was my last. The decision wasn’t a defeat to multiple sclerosis necessarily; it was a defeat to sixth graders and to an incompetent administration. I made my decision in October and enjoyed another eight months of school-related chaos and student-inspired disease revelations. My third year was my first year using my wheelchair semi-regularly. I set up my classroom accordingly, and used the chair mainly to get from my classroom to the distant bathroom, or to pick up my students from their resource classes. Occasionally I used it to monitor student progress during cooperative learning activities, but with coats and backpacks and notebooks and handouts strewn about, negotiating the chair through the close-quartered classroom was difficult. My students loved my wheelchair. Usually, in fact, if I didn’t guard it closely, one of my kids would steal it from behind my desk and wheel around my room at mach six before I could reach the chalk and scribble threateningly on the detention board.

One winter afternoon, I wheeled to the cafeteria to retrieve my second group of sixth graders from lunch. I had used my thirty-minute lunch break not to eat, rather to push myself to and from the main office making copies. I kicked myself through the door to the lunchroom right as 6-02 was lining up along the wall next to my classroom. I was practically sweating from my effort to cram 78 things into a half-an-hour, and my kids were waiting for me impatiently. A few of them were playfully fighting each other, and others appeared to have angry ants in their pants. They were moving around so much I was convinced that some type of stimulant had mysteriously slipped into the school lunch. I gave my thirty sixth graders the sternest face I could muster, and demanded that they stop writhing around and prepare for an afternoon of serious learning.

They listened to my request. Mostly. Except for Stevie. Stevie stood at the line’s center with his best friend, Brandon. Stevie loved my wheelchair. Actually, he was the one who initially removed it, piece by piece, from the trunk of my blue Nissan and constructed it in my classroom. He had studied the chair for a few minutes, furrowed his twelve-year-old brow, and then pulled the cord in the back. The seat bent upwards and Stevie slid the wheels on effortlessly, all the while he explained exactly what he was doing with more patience and clarity than I ever used while describing the five-step writing process. Stevie was difficult to teach because he had the uncanny ability to see the other, less popular, sixth graders surreptitiously picking their noses. Then he’d quietly point at the nose-picker, and learning would cease until his twenty-nine peers would stop giggling and gaping. Stevie also back flipped off of a table in my classroom before dismissal one afternoon. He landed the flip like a gymnast, but I was appalled with myself – that a third year teacher failed to notice a small child climb a table was another testament to my year end’s requisite career move.

In the cafeteria, Stevie innocently asked if I knew how to “pop a wheelie” with my wheelchair. I told him I didn’t, repeated how important it was that learning commence, and continued towards my room. Stevie didn’t move though, and neither did his classmates. Stevie’s question quickly commanded the attention of the rest of the class. Brandon spoke next,

“Try one, Miss Hooks – they’re fun.”

This comment was followed by numerous words of encouragement from the rest of the class, and culminated with my authoritative answer:

“We have important things to do, and I don’t know how to do one anyway.”

In retrospect, my response was completely ineffectual at redirecting the attention of my students away from the wheelchair and towards the all-important lesson on Ancient Egypt.

Stevie left the line and grabbed the back of my chair. “You just push yourself forward and then pull back hard, like this.”

(He did it, I tried neither to laugh nor shriek.)

I was secretly amused at their interest in this, and, rather than prioritize Egypt, I agreed – per Stevie and Brandon’s request – to attempt my first wheelie. The class (minus Stevie) was in a neat line, and by this point they’d stopped fidgeting, writhing and fighting with each other; they were focused entirely on me. Using Stevie’s words of encouragement and direction, I pushed myself forward and then pulled back quickly. Then, rather than lifting the front wheels gracefully off the ground while appearing cool and lithe in my green wheelchair, I flipped over backwards and landed directly on my head.

Luckily I wasn’t wearing a skirt.

Not so luckily, the next group of children had already entered the lunch room (at exactly the same time I landed strategically on my head). My students were motionless and silent. They were convinced I was dead. Before I could prove them otherwise, I heard Brandon whisper:

“Stevie, we killed Miss Hooks.”

Then, still upside down, I erupted into laughter and managed to yell (while laughing), “I TOLD YOU I COULDN’T DO A WHEELIE! GET ME UP!”

Steven and Brandon offered me their hands, and the line changed from a relatively straight and orderly formation into a circle of gaping and appalled (although certainly amused) sixth graders. Even Roxanne, the secretary in charge of lunch duty that day, noticed me on the floor. She grabbed the microphone from the stage (the lunch room doubled as an auditorium) and drew every child’s attention to the mess that was myself on the cafeteria floor:

“Hooks, what on earth are you doing on the floor?”

I have no idea what I taught that day. I’m sure my students don’t know either. I do, however, remember the girls in my class that gathered around my head to ask if I was okay, and the firm grasp of Brandon and Stevie's hands that pulled me off the ground.

My pride was slightly damaged – for obvious reasons. But teaching in a wheelchair wasn’t necessarily all bad. I knew I loved my students. Had I not ended up on the floor of the cafeteria with thirty concerned kids trying to get me up, I might not have learned that they loved me back.

A "Real" Teacher

2004-11-10T13:47:00.000-08:00

During my first year as a "Teacher for America" in Baltimore, there were rare moments when I didn’t leave my trailer-turned-classroom thinking: this is the single most miserable experience of my life. Sadly, this realization rarely had anything to do with the actual teaching process. In fact, it rarely had anything to do with my own students. Which led me to the disheartening conclusion that I should seriously consider quitting my job… but MS is expensive and I needed the health insurance.

Sometime in March, I literally stumbled out of my portable classroom and began the short, though laborious, hike to the main building. Actually, there was nothing laborious about the hike except for my inability to successfully navigate (or dodge) the swarm of crazed first graders who were outside for recess. There must have been some type of magnetic field surrounding my body, because no matter how hard I attempted to project irritation, I still had to pluck at least six grubby children from my legs before reaching the sacred door that symbolized my hour of freedom. This particular day was no exception.

A small blonde haired child with dark brown roots, whose head was far too large for his body, attached himself to my (slightly too short) navy skirt: “Excuse me. Excuse me, are you a teacher?” He sounded like a high-pitched alien when he spoke.

And suddenly he had several friends with him. The one who spoke next still had saved the majority of his lunch on his face for later: “Yeah! Are you a real teacher?”

This made me laugh (amidst thoughts of: why is your lunch still on your face? Please don’t touch me), and then I replied, “Of course I’m a real teacher, silly, what else would I be?”

Suddenly another child appeared, he was very chubby. He might have stored his lunch in his cheeks: “You fell over once, though.”

And his high-pitched friends all echoed his point: “Yeah, yeah! We saw you!”

The saddest thing about my resultant thought process was that I couldn’t isolate which time they were referring to. Suddenly I took them very seriously. I thought at first that they doubted my status as a “real” teacher because of my short skirt, or maybe because they'd heard the previous racket that resonated from my classroom. And, coupled with the fact that one of my eighth grade students was recently escorted from my classroom by the school disciplinarian for wielding a lit match during my class, I honestly had to hesitate before affirming my own status as a “real” teacher. That they thought I wasn't real because I fell over, though? That was absurd.

I squatted down to first grade eye-level: “You mean in the computer room the other day?”

Four pairs of big eyes nodded in unison.

“Well why can’t teachers fall over every once in a while? Don’t you fall over sometimes?”

Their heads continued to nod (this might have been a result of ADD, not agreement). And the big-headed child, with two-toned hair stepped forward:

“Well, were you okay? Are you hurt?”

And this question instantly dissipated my concern for their collective absurdity. Because amidst the atmosphere of general hostility and complete self-involved ignorance which characterized many of my experiences at that school, there was a moment of genuine compassion.

A Silent Minority

2004-11-04T11:43:00.000-08:00

The Americans with Disabilities Act (ADA) is a Federal civil rights law that prohibits discrimination against people with disabilities in everyday activities, such as buying an item at the store, going to the movies, enjoying a meal at a local restaurant, exercising at the health club, or having the car serviced at a local garage.

My mom recently asked a friend why, if the ADA has existed since 1992, things are still so inaccessible. The friend’s answer was succinct: “People with disabilities comprise a silent minority.”

When my mom relayed the story to me I scoffed at the word “silent.” I’m the opposite of silent. My roommate needs ear plugs to study while I talk on the phone, and my laugh is so cacophonous that entire restaurants filled with people have stopped chewing to turn and gape at me. I’m decidedly extroverted, yet increasingly disabled. Loud + Disabled = A Silent Minority? I don’t think so. Plus, I’m as open about my disability as possible. Short of tattooing “I have multiple sclerosis” across my forehead, I do everything I can to assure that strangers understand why I fall over in public, why I use a wheelchair to grocery shop, and why I need someone else’s barstool in a bar.

Clearly I have no problem discussing my disability with anyone who asks (or happens to be in the way). But when it comes to advocacy my mom’s friend was correct: I am silent. Not only am I silent, I’m apologetic. I’m riddled with guilt whenever someone stands in the rain for an extra few minutes to open a door for me, or when someone in Safeway reaches an item off of the top shelf for me. I genuinely don’t want to ask someone for their seat in a bar, and I feel horrible asking friends to take me to the bathroom in restaurants. At this moment, I’m the only 26 year-old I know who genuinely needs assistance getting from point A to point B to ensure that I don’t wobble into a stranger, lose my balance and fall over or, most horrifying yet, injure myself in a bathroom and rely upon an ambulance to extract me from a hotel room (it’s happened). Often I use my wheelchair and get myself stuck between doors, or find myself asking for help when something remains just out of my reach. Invariably, whether I’m grabbing onto a stranger’s head for balance, or asking someone to open the door a little wider so I can dislodge myself from an entrance, the action or request is always followed by an overt expression of guilt that boils down to a repetitive, “I’m so sorry.” Then I smile as sweetly as possible, internally remind myself that I didn’t choose to knock the guy’s toupee off, and continue on my way.

One of my teacher friends refuses to let his students use the words “I’m sorry.” He says there are enough “sorry” people in the world, and if you’re truly contrite it is better expressed through the words “I apologize.” When he told me this I laughed, but didn’t necessarily agree. It made me think, though. It also made me increasingly cognizant of how often I use the phrase “I’m sorry.”

Sorry, according to Roget’s Thesaurus, connotes both regret and remorse. It’s also synonymous with sadness. In all cases, the word fits my circumstance: I truly am sorry that my friends have to help me get to the bathroom, I regret my efforts to get through heavy doors with my wheelchair, I’m remorseful that I’m not able-bodied, and when I want to purchase a gift at an inaccessible store, my frustration yields a certain level of sadness. Having multiple sclerosis makes me mourn things I never used to appreciate: shoveling snow, vacuuming, shaving my legs without sitting on the floor of the tub, or even cleaning the toilet without fatigue. I watch my roommates take the garbage out and get ready to go out without constant concern about whether they’ll be able to stand later that evening. They’re able to clean the house, work out, help with my laundry and shower – all without falling over. This, to me, after a mere seven years with MS, is remarkable. At the same time, though, I clearly remember my disdain for such tasks: no one enjoys cleaning the toilet, fatigue or not. Which is why I feel so sorry – partially for myself (because the only thing worse than cleaning a toilet is wishing you could) but mainly for the friends and family members I impose myself upon constantly.

It’s interesting to me how guilty I feel; even when others love me unconditionally. I know my mom will still love me after she goes up and down the stairs for the fifteenth time collecting imperative things that I’ve forgotten from my room, but I still feel awful. Consequently, I apologize. My resultant overuse of the word “sorry” once caused my roommate to unintentionally fling me on the floor of a restaurant because she moved abruptly to admonish my sixth consecutive utterance of the phrase, “I’m sorry” (I kept stepping on her heels). Her sudden movement caused me to lose my balance entirely (which was placed, in my opinion, burdensomely, on her shoulders) and I ended up underneath the bar, across the room. I feel even worse when I startle strangers – when people who don’t love me unconditionally have to get the Ben and Jerry’s out of the freezer for me in the grocery store, or when strange life guards at the YMCA have to scrape me off the slimy pool deck because my legs won’t support me and my feet refuse to work on slippery surfaces. People have held their umbrellas over me while I struggle with my slippery metal wheelchair in the rain, have pushed me out of puddles when I’m stuck, and have pulled and pushed me up stairwells. I feel like these poor people will suffer at least some level of emotional trauma as a result of my occasionally tear stained face, or that their lives will forever be tainted by the strange girl who lost her balance and grabbed onto them in the Gap.

Someone wrote once that as a person with a disability, you “have to be the kind of person that others want to help.” For me that translates to openness about my disease, to constant apologies regarding my needs, and to an overly active sense of humor – all of which I use to compensate for my self-acclaimed burdensome nature.

I thought about these things a lot: whether I do, in fact, represent part of a “silent minority,” why I feel so guilty, and why my ex-boyfriend told me I “apologize too much.” And after thinking about it and talking about it and even praying about it some, I decided that my definition of the word “silent” was limited and that my mom’s friend, on some level, was right. I view the word silent as exclusively synonymous with the word “quiet” (which I’m not). But silent also means “unvoiced” and “unspoken,” which, when it comes to things I need, is true. I am far more likely to apologetically ask for help, than liable to demand that restaurants/stores/gas stations/bars etc. are made accessible. My roommate summed it up concisely when she suggested, “You make up a population of silent people because you already feel too damn guilty about asking for help.”

I wonder, if the ADA’s objective were achieved (it was, after all, passed twelve years ago), would I need to be “the kind of person others want to help”? Would I need to constantly apologize, or make sure to be open and funny and warm if I could achieve my objective without assistance? I doubt it. I’d be able to reach things in grocery stores, get jeans off the shelf in the mall, and get myself through doors at the gym. I could save my overuse of the word “sorry” for my roommates, continue to mourn my usefulness in the kitchen, and help myself in public. I do comprise a silent minority right now – I am careful with my energy and I’m particular about the battles I choose to pick. I wonder, though, when this will change; when the ADA will offer more than lip service and will provide an entire population of people with disabilities the chance to stop feeling guilty all the time and accomplish things on their own. In the meantime, maybe it’s time that I wean myself away from the phrase “I’m so sorry” and speak up about the things that really need to be said.

Impatience and Hope

2004-11-03T13:23:00.000-08:00

I started my last journal with a T.S. Eliot quote: "I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing."

Apparently when I started the journal, I found the quote applicable. The words make sense – especially since, as strange as it seems, my journal is actually a written compilation of letters to God rather than the deep inner working of my mind written to no one in particular. T.S. Eliot is right, I do often hope for (and pray for) the “wrong” things. Plus I'm edgy and impatient and occasionally hostile when my prayers don't yield what I want them to. I wonder, though, what life would be like if I were able to enter some meditative-type/acquiescent stage of my life and just wait around contently for things to play out the "right" way.

I juxtaposed T.S. Eliot’s quote with an entry that asks God for the strength and guidance to:
1. Complete my book, write and mail query letters and proposals and find an ideal-type agent and publisher.
2. Find a job that capitalizes on my strengths and allows me to give of myself to others.
3. Learn to be more proactive rather than reactive when faced with challenging situations (i.e. anticipate such challenges and learn to deal with them in an effective and reasonable fashion rather than throwing temper tantrums etc.).
4. Heal physically.
5. Write, give, reflect and spread love.
6. Love at least one person more than I do now. Learn to accept and appreciate love in return.
7. Cultivate grace, willpower, and improved character.

All seven of those prayer requests necessitate a certain amount of hope, right? They also require patience and faith and, in some respects, self-motivation. Maybe T.S. Eliot was right, and we should just sit back and wait for the things we need, but I’m worried about what I’d do in the interim. I despise apathy.

Plus, I'm willing to admit that sometimes I hope for the wrong things: my ex will not fall magically in love with me, I most likely will not wake up tomorrow morning without MS, and unless I make a few phone calls and continue to write, I will likely never find my dream job. But something pushes me to embrace life in spite of loneliness, a neurological disease and a nonexistent publishing contract. For me it's hope. It’s the fundamental belief that, as the unknown author purports, “Everything will be okay in the end. If it is not okay, it is not the end.”

In the meantime, I’ll most likely wait with hope, a moderate amount of predictable impatience and the acknowledgement that, until my limbs refuse to cooperate at all, I will not “be still.”

Warm Towels and Cold Showers

2004-11-02T22:05:00.000-08:00

I was listening to Maroon 5 in my car last week, and one of the songs includes a line that says: How does it feel to know you'll never have to be alone? Post-song I arrived at the pool. Then, for an entire mile and a half back and forth through the 50 yd pool, I had the same line stuck compulsively in my head: how does it feel to know you'll never have to be alone? Over and over and over again...

Which got old after about the third lap.

When I got home that night though, I asked my roommate, Anique, what that feels like - to never have to be alone. She's recently engaged and has been involved in this amazingly blissful and drama-free relationship for two and a half years. When I asked the question she was on her way out the door, and I was itchy from the overly-chlorinated pool, so we went our separate ways - Anique to her fiancee's house, and myself to the shower. I asked her for a proper analogy by the weekend.

The next day, though, I changed CDs in my car, and forgot about the question entirely. Anique, thankfully, didn't.

On Saturday night, after a full day of wedding-related shoe shopping, the two of us sat down for Mexican food and margaritas at a local restaurant. She turned to me and said, "Do you remember the question you asked me? The one about what it feels like to never have to be alone? Well I have an answer..."

She then launched into the following: she talked about taking a shower in the middle of the winter, and running out of warm water towards the very end. She talked about how it feels to rinse the conditioner out of your hair, start to get goose bumps, and quickly reach out of the shower to grab your towel (which, you discover, is missing). Right when you're about to start screaming for your roommate, or the mysterious God of shower-remedies to bring you a towel, and you're most definitely nearing hypothermia, the door opens and your fiancee enters. Before you even begin your towel-related tirade, he hands you one. One that he just removed from the drier. He, with no prompting, hands you a big towel that's warm and fluffy and smells like Bounce drier sheets.

That, she said, is what it feels like to never have to be alone. It's security. It's inevitable warmth when you think you're likely to freeze to death, and it's knowing that someone out there is thinking about you even when you're too absent minded to think about yourself.

She might have said more, but at that point I was too busy making a public spectacle of myself crying hysterically to listen properly. I'm not predisposed to public crying fits, honestly. I embrace my independence. I love my freedom and my friends and my own schedule etc. I have a strong faith and a beautiful family and friends that love me unconditionally... but I can't think of too many things that compare to a warm towel after a cold shower. I really can't.

Why Baltimore is Not The Third Ring of Hell - Thoughts on Where Live...

2004-11-02T13:56:00.000-08:00

I have defended Baltimore since before I moved here. I grew up riding horses and working in a local grocery store in Ithaca, New York. I went to college at Colgate University in a town that contained more farm animals than people and enjoyed my only collegiate “city” experience in a place called Wollongong, Australia, that no one has ever heard of and that I couldn’t pronounce properly until last week. When I was accepted to Teach for America in 2000, I selected Baltimore as my first choice out of fifteen possible places to end up. My riding instructor in Ithaca had lived down here in the early ‘80s, she worked at Pimlico and lived on North Ave. She was appalled by my decision:

“Why on earth did you choose Baltimore? The people down there are unfriendly. Parking is a pain, my car was impounded twice, and someone broke into my car to steal horse blankets.”

I had my reasons, though. And even though I’d never so much as visited “Charm City,” I never second guessed my choice. 1. I wanted to get out of rural New York before developing that weird upstate accent where the “a” is replaced by a nasally “eh” sound. 2. I have multiple sclerosis and needed a city where I wouldn’t need to rely on public transportation and/or my legs to get me places. 3. I wanted access to a qualified neurologist (since my previous doctors had recommended two specific drugs that simultaneously combated not my disease but each other). 4. I didn’t want to be in a different time zone than my family and friends. Baltimore was the perfect choice on all fronts. I explained my rationale to my riding instructor, and countered her arguments with:

“Ithaca is filled with crunchy tree huggers, parking is a pain in any city, I don’t know what ‘impounded’ means, and your car is a stupid place to store horse blankets anyway.”

Four years later I stand by my decision. Yesterday when my friend characterized Baltimore as “the third ring of hell”, I couldn’t help but feel a twinge of anger; especially since he spends his free weekends in New York City. As I reflect upon my most recent trip to New York over Labor Day weekend, I recall $20 enchiladas and shot-glass-sized margaritas at a sub-par Mexican restaurant but most especially, I remember my experience in New York’s Penn Station.

While I’m not wheelchair “bound” at this point, I’m definitely wheelchair reliant, so I had my wheelchair with me for the weekend. When my cab dropped me off at NY’s Penn Station, I assembled my chair and plopped my backpack in the seat. I pushed my chair across the sidewalk to the station doors and discovered that there was no elevator near the entrance. I’m sure there is an elevator somewhere, I just couldn’t find it and I was trying to move at a calmer Baltimore pace. Consequently I was running late. I thought I’d carefully maneuver my chair backwards down the escalator, but it wasn’t moving, and the stairs looked like an MS deathtrap. After I’d politely begged a muscular stranger to carry my chair down the stairs, I (awkwardly) reached the main level of the station. There I discovered that my train was already boarding (ten minutes early). A hoard of people gathered in front of the only down escalator that led to the platform. I, still pushing my chair, reached the hoard and packed myself in among the other pushers and shovers.

When I reached the ticket collector I asked him for help – I’m not good at taking myself down escalators, much less myself and a wheelchair. Ticket man said no, he had to collect tickets. Meanwhile my chair and I were blocking the line: no one else could descend the escalator unless I moved. The line of people seemed extremely irritated with me at this point and I heard small “hmpf” and “tssk”-type noises while my eyes started to burn. I calmly explained my situation to ticket man – that I had MS, that I couldn’t find the elevator, and that I was literally stuck between the increasingly impatient mob of people and the escalator. He reluctantly agreed to help (he had no other option - I was honestly stuck) and took my chair down the moving steps while I willed my face to return to its normal, less humiliated color. Once my chair was safely deposited on the correct platform, I grasped its handles for stability and pushed it shakily towards the “handicapped-friendly” car. I finagled the chair over the foot-long gap between platform and train, and hung a right into the car to find a seat. There I discovered that the “handicapped friendly” car wasn’t friendly, rather completely inaccessible. The little area for luggage/wheelchairs was taken up by a new set of seats, and my chair was too wide to fit down the aisle. Once again I was stuck. And the “tssking” “hmpfers” were breathing down my neck. Desperate to remedy the situation I pulled the wheels off, folded the wheelchair as much as possible, put the body of the chair on the seat and collapsed onto the floor. Then, happily, the impatient crowd stepped around me and located seats where they could intently focus on text messaging their friends.

At least fifty people stepped around me, oblivious to the sniveling heap of girl on the floor. At least a dozen of the fifty looked visibly annoyed. Of the group, only one stopped to help. I tried to tell him everything was under control, but the wheelchair on the seat was his cue to ask twice. A few minutes later, wheelchair carefully stowed in the shelf on the other side of the train, he and I sat across from each other and talked. I apologized for being such a basket case and for the wheelchair grease on his jeans, but for the most part we just enjoyed each other’s company for the three hour train ride.

How can a group of people be that frantic to leave a city? I understand impatience, I really do, but when it interferes with basic human compassion I start to worry. And, as I battled the crowd and the stagnant, humid air that circulated throughout Penn Station, I thought I had descended into my own “third ring of hell” and started to appreciate Baltimore just a little more. No one’s ever shoved me or my wheelchair to get somewhere three seconds faster. The red caps at Baltimore’s Penn Station make sure that my bag and I reach an appropriately accessible car, and the elevator to the platform is easy to locate.

Besides the smoldering humidity, there’s something different about the atmosphere here; it’s warmer, yes, but the warmth is measured by more than just a thermometer. Warmth, in my opinion, is a Baltimore taxi driver linking my arm to get me safely to the door of my row house, or the hostess at Koopers seating me as quickly as possible because she knows I can’t stand up for too long. It’s the customer service representative at BWI running me and my wheelchair to my gate so I wouldn’t miss my flight, or the Safeway employees helping me get my grocery bags to my car. It’s someone at the pool helping me assemble my wheelchair, or my favorite bartender at Max’s handing me a barstool before I accidentally wobble into an innocent stranger. People here don’t seem as brusque and rushed – maybe that’s where the “charm” comes from. My riding instructor was right about the parking here, and I never leave anything valuable in my car, but I stand by my initial decision, and maintain that Baltimore is not unfriendly.

The guy who helped me on the train last week lives in Maryland. I can’t say I was surprised.